Dementia Strategy
The next item of business is a debate on motion S3M-4797, in the name of Shona Robison, on a dementia strategy.
I am pleased to open this debate on dementia for the Scottish Government, and I welcome the representation from all parties in the chamber. I recognise the support that all members offer to those with dementia and their carers.
Dementia is an illness that usually develops slowly. It causes impaired memory, thinking and judgment. It predominantly affects those over 60 and is a major cause of disability for elderly people. If people live longer in Scotland, more people will be affected by it. We project that the number of people with dementia will increase from around 70,000 in 2009 to 127,000 in 2031. Therefore, the number will close to double in just over 20 years.
Nearly every person who has or develops dementia will have a partner, children and friends, whose lives may also be transformed by the onset of the illness. It is estimated in work done by the European Union that, for each person with dementia, on average three other people are directly affected. It is a life-changing event for everyone who is concerned with their care. The illness will affect all of us, either directly or indirectly.
People with dementia require a range of services over the course of the illness, from initial information and support following diagnosis, to more intense treatment and care in the community, and to residential and long-stay care in some cases. The cost of that care is not insignificant. Alzheimer Scotland suggests that the overall cost of dementia in 2007 was between £1.5 billion and £1.7 billion, which is an average of £25,000 per person per year. Those figures include the costs of national health service and social work care, housing and the significant and valuable informal care that is provided by family and friends.
The Government gave a commitment to make dementia a national priority for Scotland, and we have been working to make that a reality. That commitment is reflected in our national target on early diagnosis, in our funding of activity on post-diagnostic support and the raising of public awareness and in the guidance that has been issued on care in acute and accident and emergency settings. We are committed to publishing a dementia strategy for Scotland next spring, and I am keen to hear the views of Parliament as we take that work forward.
The work to develop the strategy is already well under way, with five work streams that focus on different aspects of the improvement challenge that we face. The first work stream is consideration of how we can offer effective treatment and manage challenging behaviour without inappropriate recourse to anti-psychotic medication. The work stream directly responds to the issues that were raised in the "Remember, I'm still me" report, which was published earlier this year by the Scottish Commission for the Regulation of Care and the Mental Welfare Commission for Scotland. It will also consider the effective implementation of part 5 of the Adults with Incapacity (Scotland) Act 2000, which the Parliament passed to protect the rights of those who lack capacity.
The second work stream focuses on assessment, diagnosis and patient pathways. It builds on the work that is already under way in taking forward integrated care pathways for dementia and the work that is being pursued with health boards and general practice on early diagnosis. It considers both the different services that will be required by a patient over time and the process by which they move through the system.
The third work stream will consider the general service response to dementia when people with dementia come into contact with general health services. We know that accident and emergency services can respond poorly to people with dementia and that people with dementia are more likely to be admitted inappropriately. Similarly, the care that people with dementia receive in general hospital settings is not always of the standard that we would like it to be. We believe that we can improve systems, skills and knowledge and, through those improvements, produce better outcomes for people with dementia.
The fourth work stream focuses on rights, dignity and personalisation. It is a key area for improvement, as it brings together both the legal context and the culture and behaviours of the people who provide care and treatment for those who have dementia. Our objective is to improve the knowledge and understanding of those who provide services so that they are better able to maintain people's dignity and provide more humane care and treatment. We want to embed the idea of personalisation into services, so that people will continue to see the person and not the disease. We also want to explore how we might use standards more effectively to promote quality improvement and how we can use the new scrutiny arrangements in the Public Services Reform (Scotland) Bill and the arrangements that will be brought forward under the proposed patients' rights bill to secure better outcomes for those who have dementia.
The fifth work stream is consideration of health improvement, public attitudes and stigma. We know that some health improvement activities that people can engage in, such as taking exercise and being careful about what they eat and drink, reduce the likelihood of developing some, although not all, forms of dementia. We also know that work on the physical health of those who have dementia will improve both their life expectancy and their quality of life. Beyond that, the work on stigma and public awareness will contribute to the creation of a society in which those who have dementia and their carers are not shunned, ignored and misunderstood but regarded with respect and compassion.
I note the announcement of the five work streams. Will the minister consider addressing the concerns that exist about the 3,000 people in Scotland who have Parkinson's disease dementia? There are worries that they do not have any clear pathways into appropriate care, so I ask that consideration be given to those people in the strategy.
I was going to say that all the issues and comments that are raised during the debate will be fed into the work on the strategy to ensure that they are responded to and considered appropriately by all the groups and organisations that are involved in that on-going work.
Finally, I should mention that the work to develop the strategy is also supported by the mental health benchmarking project, which is already in place. The benchmarking project will develop our understanding of activity and performance data in relation to services for those with dementia.
We have established those work streams following consultation with the cross-sector dementia forum, which I established in 2007. We believe that they reflect the main challenges that we face, but they are not intended to constrain or exclude consideration of other issues. Indeed, we agreed with the Convention of Scottish Local Authorities and other partners earlier this year to take forward a strategy for reshaping care services for older people, and progress with that—which I will bring to Parliament later this year—will tie in closely with the work to develop the dementia strategy.
We are committed to issuing a short consultation paper by the end of this month, and we will use that to support engagement across the country on the issue of dementia to ensure that the strategy that we produce reflects the challenges and expectations of the nation.
As I said earlier, I am keen to hear today the issues that are on members' minds and to learn what members want us to take account of in the production of the strategy. I know that many MSPs have direct experience of caring for people with dementia, as well as the knowledge that comes from helping constituents through the health and care system. I assure members that the comments from this debate will be fed into the work streams.
I am happy to accept the Liberal Democrats' amendment, which quite rightly focuses on standards of care. I am also happy to commit to producing the strategy by April 2010.
I ask members to reflect on whether the Labour amendment is in danger of pre-empting the work streams and the consultation. Given my assurance that the comments that are made during what I hope will be a consensual debate today will be fed into the process, I am not sure that it is helpful to focus the strategy on particular areas at this stage when those issues will be debated and discussed as part of the on-going work on the strategy.
We have embarked on a shared endeavour, which we are taking forward with clinicians, carers and those with dementia. We know that the outcome will be richer because we are taking that approach. I am keen to be as inclusive as I can be. Each of the work streams is chaired by someone from one of the organisations that we are working with, and we have not constrained them with regard to who they can work with or what they can consider.
We will play our part in committing to providing leadership on this work. There will be hard decisions to make: we cannot do everything all of the time, and resources are finite. We know that change takes work and time. Improving how a whole system works and orientating it to the needs and interests of the individual service user—the personalisation objective—is a huge endeavour.
As I said at the outset, we have established dementia care as a national priority in Scotland. That commitment must be measured against the improvement in the quality of care that people with dementia experience. We are committed to delivering on that commitment, and I call on the Parliament to support us in that work.
I move,
That the Parliament recognises the work that is being taken forward by the Scottish Government to establish dementia as a national priority, working in partnership with the NHS, local government, voluntary sector organisations such as Alzheimer's Scotland, the Scottish Dementia Working Group, regulatory and scrutiny bodies including the Mental Welfare Commission, the Social Work Inspection Agency and the Care Commission and experts from the Dementia Services Development Centre at the University of Stirling, the Royal College of Psychiatrists, the Royal College of General Practitioners and the Royal College of Nursing to improve the care, treatment and support available to those with dementia and their carers and welcomes the commitment to publish a dementia strategy for Scotland in spring 2010.
The recent "Panorama" programme on care for the elderly highlighted a number of difficult issues. It raised the issue of dignity for the elderly to the top of the political agenda, which is where it should stay.
In the weeks before the programme was shown, I dropped in on an elderly constituent who was still living in his own home. I found him sitting on a commode in his living room as he could not get back to his chair. He was waiting for the next visit from the support workers. Where is the dignity for an elderly man sitting in a room that has become not only his living room but his bedroom, his bathroom and his toilet? In the previous debate, there was a lot of talk about human rights. I will let members draw their own conclusions about the comparison between my constituent's human rights and the human rights of, for example, those in our prisons.
I left that house angry and upset that, despite all our efforts to care for people in the community, there are still too many elderly citizens who are, essentially, being warehoused in their own homes. Of course, not all elderly people have dementia but, for those who do and their families, we need to focus on the added pressures of getting all this right.
This week, I also chanced to visit a family at the very time their 93-year-old mother returned home from a stay in hospital. They were angry at the way in which she had been taken from the ward and left, confused, in a hospital corridor for a number of hours while waiting for an appointment in a different department. She was in her nightclothes and not properly attired to sit in a hospital corridor.
The family was also upset because the mother had been taken off her usual medication on admission, which had added to her confusion. They told me that she had missed out on being washed because she had not spoken up when patients in the ward were asked the general question, "Who's to get a bath?" She had not eaten properly as the procedures for flagging up her confusion and the fact that she might need assistance had not been followed. Although the family praised the nurses, who had stepped in to do what they could, they held in complete disdain a system that did not seem to have the basics in place to deal sensitively with an elderly woman who showed signs of dementia.
I am glad that in her speech the minister recognised that we need to do more to get these things right. After all, in debating the issue, we must remember that dementia is going to affect more people, who will require services to meet their needs.
At this point, I pay tribute to Irene Oldfather for leading work in the cross-party group on Alzheimer's. I doubt that anyone else in the Parliament has her knowledge of, passion about or commitment to this issue. Indeed, she has been speaking out on it for a number of years, even before it became a public issue.
One rather ironic aspect that has already been acknowledged is that, as we have become more successful in dealing with serious illnesses such as cancer, heart disease and stroke, more people are living longer and are therefore more likely to suffer from dementia. We know, for example, that by 2027 the number of people of pensionable age is projected to rise by 25 per cent to nearly 1.2 million and that the number of elderly people aged 75 or over is due to rise by 61 per cent. It is also projected that by 2031 there will be around 114,000 people with dementia in Scotland, which is an increase of 75 per cent. Indeed, Alzheimer Scotland has described such figures as epidemic.
It goes without saying that we need to start planning now for that eventuality. We must ensure that all older people can play full and active roles in our society, wherever and for as long as possible. When they need it, they should get the very best care and support. Delivering that will require changes in policy and thinking, and I believe that the Alzheimer Scotland consultation on a charter of rights for people with dementia represents a very useful step in trying to change both.
It is for that reason that the Labour amendment specifically mentions the work of Alzheimer Scotland. We are not seeking to limit or constrain the debate in any way—I hope that the minister will take that on board—and I am sure that all members will want to congratulate the organisation on the role that it has played and will continue to play.
We on the Labour benches believe that we have a strong track record on and a long-standing commitment to social justice for our elderly citizens. For example, we brought in free personal care, free bus passes and central heating schemes for the elderly; we set up the Scottish Commission for the Regulation of Care and the Stirling University dementia services development centre; and we introduced the Adults with Incapacity (Scotland) Act 2000, the Regulation of Care (Scotland) Act 2001, the Community Care and Health (Scotland) Act 2002 and a whole range of other initiatives that we believe have helped to take things forward. However, we know that much more needs to be done, particularly for the elderly population and those who are unable to speak up for themselves and need us to represent their interests.
For example, we must address issues related to support for families, such as access to regular respite care. Carers will rightly point out that it is one thing to have their needs assessed but quite another to have such an assessment carried out when there are no resources to support them in their task. As we know, we must ensure that dementia sufferers, their families and indeed all who access care services are aware of the help to which they are entitled and that they are able to receive.
We have heard about what happens in hospitals, but we also need to examine the care that dementia sufferers receive in care homes. I repeat that we must ensure that we are not simply warehousing these people; they must have adequate physical activity, mental stimulation and a good-quality environment to give them the life that we would want.
After the Mental Welfare Commission for Scotland made unannounced visits to 16 wards that provide long-term nursing care for people with dementia, it produced a report that drew particular attention to the need to improve the quality of the physical environments that are provided for dementia patients and to ensure that patients are not simply confined to the ward, but are instead off ward at some stage. The commission's review of patient files found that some patients, despite being physically able, had not crossed the hospital threshold for more than two years and that many more had not been out in the previous year. That is not the quality of life that we want for our elderly.
We need specific care guidelines that take account of the particular needs of people with dementia. As we are considering radical solutions and new models, we should give more thought to, and invest more resources in, not-for-profit models in which patients and their families can be genuinely involved in the decisions about the care that is provided. There are good models of such care co-operatives that we can draw on. I visited one recently south of the border in which the users of the service were members of a co-operative, which employed the care staff who looked after them. Very good work is also done in the voluntary sector in Scotland. For example, the South Ayrshire Dementia Support Association provides excellent day facilities and support, but it is constantly struggling for funding to continue the service.
The plan to produce a strategy is welcome. I hope that the strategy will focus on improving the quality of care to give people with dementia the dignity and fairness that they deserve. However, the strategy must be backed up by resources, as has happened south of the border. When I worked in social work and for Who Cares? Scotland, I used to say that the benchmark should be whether we would be happy with the quality of care if it was for our own kids. It might be tempting to use our relatives as a similar benchmark for elderly care services, but it would hit home harder if we projected ourselves into the future. How many of us would want to live in the care homes that we visit? How many of us would like to be prisoners in our homes because sufficient resources were not available to support day facilities? It is time to bring the care of people with dementia into the 21st century. I sincerely hope that the strategy will come up with a radical approach.
We support the Liberal Democrat amendment, which aims to ensure that a specific timescale is put in place. I hope that the minister will give due consideration to the Labour amendment.
I move amendment S3M-4797.2, to insert at end:
"; notes the consultation undertaken by Alzheimer's Scotland in the form of road shows, focus groups and an online questionnaire to inform a charter of rights for people with dementia; calls on the Scottish Government to recognise the priorities identified by stakeholders for early and easy access to diagnosis, support to enable people to live at home for as long as possible and higher quality of care provided in all care settings by specialist dementia staff so that people with dementia can reach their full potential; further notes the publication of the National Dementia Strategy for England in February 2009, supported by £150 million, and the importance placed in it on the role of dementia advisers and specialist dementia care staff to support people with dementia from diagnosis to end of life, and calls on the Scottish Government to ensure that sufficient resources are made available to support the Scottish strategy."
The title of that chilling report "Remember, I'm still me" has a particular resonance for Liberal Democrats because, philosophically, we believe that, if we concentrate the solution on the individual, we are much more likely to produce the right solution for the population as a whole—and we do not believe that the converse is true. That is particularly the case with dementia, as a person-centred approach is essential to developing a strategy that will ensure that individual sufferers receive the appropriate level of care and support. As the minister and Cathy Jamieson pointed out, the scale of dementia is frightening. Cathy Jamieson referred to the possibility of a 70 per cent increase in dementia in the next 20 years, which is alarming. We know about the issue and we know that we must address it.
On the motion, we are all happy to recognise the work that the Government is doing in collaboration with a range of expert bodies. We are happy because we, as a Parliament, agreed the terms of reference that are to be applied in developing the strategy. It is important to remind ourselves of that because, although the minister made a plea for us to give additional examples—and we are of course happy to do that—nothing fundamental has happened since we agreed the terms of reference that should prevent the working group from getting on with the job of delivering.
At that time, we all agreed with the minister that we needed
"to develop actions and policies that respect and promote the rights and dignity of people with dementia, in accordance with the principles of the Mental Health (Care and Treatment) (Scotland) Act 2003",
which is another measure that the Parliament passed. We all wanted there to be early diagnosis and a better response to dementia that includes post-diagnostic support and information for carers. We wanted improved quality of care, treatment and support wherever they are provided. We wanted improved training and knowledge of the workforce to include those in general health and social care settings, such as accident and emergency units and GP surgeries. We wanted improved arrangements and resources that need to be put in place to ensure effective delivery of the proposed changes. Of course, we wanted the minister to take account of the findings in "Remember, I'm still me".
I say to the minister that, although I am happy, as always, to co-operate in light of any additional information or examples, I am bound to say that Liberal Democrats do not believe that there has been a material change since we agreed those terms of reference. I hope, therefore, that we can proceed to some resolution on the matter, which is why we lodged our amendment.
With all due respect to the minister, our amendment seeks to remove the slightly self-congratulatory tone of her motion—we welcome that she has agreed to do what we all agreed that she should do. The minister has taken that in good part and I am grateful to her for that. We also wanted to impose a more specific timetable. The motion refers to spring—well, what is spring?
It is daffodils.
Yes, indeed, but daffodils might not appear until later on and, as we all know, we did not quite get the barbecue summer that we were all looking for. If the date for delivery were April, we could at least have a sensible debate. It is much more important, as we state in the amendment, for the minister to look at the wider community as she develops the strategy, and actions need to be put in place as she does so. We cannot simply wait until next April before we address the wider issues. I know that a lot of work is being done in that regard, but frankly we still have to make progress on some of those issues.
Many of the issues identified in "Remember, I'm still me", which did not deal with dementia exclusively, are live in the community. Cathy Jamieson narrated examples of such issues in her remarks, and I am sure that we could all narrate—as others will—examples of people with dementia who are still lacking in fundamental care. Many of us watched with horror the BBC documentary to which Cathy Jamieson referred.
I find it slightly difficult to take exception to the Labour amendment. I am bound to say that, as Alzheimer Scotland is part of the working group and therefore working on development of the strategy, it is difficult to imagine that that organisation would withhold information from its survey.
I am glad that there has not been too much emphasis on how precisely the strategy will be resourced because that will be a matter for future debate—the Government will announce the strategy, it will be bound to announce how much it is prepared to allocate to it, and it will be for Parliament to debate and decide whether it regards that amount as sufficient. Indeed, the Government has been given notice in the Labour amendment, which calls on it to finance the strategy sufficiently.
I move amendment S3M-4797.1, to leave out from "welcomes" to end and insert:
"calls on the Scottish Government to work with these stakeholders to ensure that the highest standards of care are achieved for those with dementia in care homes, in the community and in hospital and to publish a dementia strategy for Scotland no later than April 2010."
As a member of the cross-party group on Alzheimer's, I, too, commend Irene Oldfather for the excellent work that she has done on the issue. Cathy Jamieson's speech also prompts me to mention that I visited an old friend in Montrose during the recess who said that she feels very guilty about the carers' coming in. She was made to feel guilty because she needed care. That is not where we want to be.
I have a little list of concerns for the minister. A good starting point for the debate is the Government's health improvement, efficiency, access and treatment target that states:
"Each NHS Board will achieve agreed improvements in the early diagnosis and management of patients with a dementia by March 2011."
In response to that, Audit Scotland wrote in its "Overview of mental health services":
"It is not possible to comment on whether the target will be achieved as it is not clear how earlier diagnosis and management of people with dementia will be recorded or how improvement will be measured. The target is vague and clearer definitions and guidance are required".
I hope that the dementia strategy that is to be published in April will be more focused and clearer, and that in the long term it will be more effective.
It might help Mary Scanlon to understand the target if I explain that it is linked to the number of people with a diagnosis of a dementia on the GP dementia register. The onus is then on the GP, with monitoring from the health board, to ensure that there is a regular review and assessment. That ensures that the person is known about and that their case is managed.
I am stating the concerns of Audit Scotland, which I think are legitimate concerns in the long run.
Of course, a service for patients can be improved only if it is fully staffed. Audit Scotland highlighted the number of long-term vacancies for consultants in old-age psychiatry in Highland and Lanarkshire. Its report also told us once again that services need to be joined up. How often have we heard that?
One of my main concerns today is that that position comes against a background of serious cuts in social work services. In Highland—the area with which I am most familiar—social work has to find more than £17 million of cuts in the next three years as part of an overall budget cut of £80 million. That has affected the charge for home help call systems, which has increased from £28 a quarter to £65. One independent care home in the Highlands has increased its charges to those who are self-funding by 33 per cent in order to make up the shortfall in council funding. I have problems with the continuing situation in which two people in the same care home can be charged different amounts for the same level of care. One elderly service user has gone through £35,000 of savings in the four years for which she has been in the home, and her home is now on the market to pay for future care.
Yesterday, Highland Council decided to fill up its own homes and, in the interim, is refusing to refer to the independent sector, which is cheaper but of the same quality. In the midst of the recession and the quest for efficiency savings and high-quality services, why is it acceptable for councils to pay £350 to £450 more per person per week for people to be placed in council homes rather than in the independent sector, given that both reach the same quality standards? For example, Highland Council pays £464 for an independent home but £819 for a council home. Argyll and Bute Council pays £357 for the independent sector but £817 for a person in a council home. In the minister's area, Dundee, the figures are £454 for the independent sector but £826 if the person is in a council home. I would have thought that the Cabinet Secretary for Finance and Sustainable Growth would wish to discuss that issue alongside quality services and value for taxpayers' money, given that a person in a council-run home is funded about twice as much as a person in the independent or voluntary sector.
We need more preventive care to reduce the demand on accident and emergency services. We should also do more to offer families direct payments to ensure that they have the freedom to choose their care and ensure that they get the required time allocation.
As the "Panorama" programme showed us, there is no doubt that elder abuse is a concern, particularly at a time when more elderly people are dependent on carers and visitors rather than on the support of their family and friends. The problems include physical or verbal abuse and carers who do not always follow the standards and guidelines, particularly in relation to nutrition and personal care. Such things can be difficult to prove when a person becomes very dependent and is unable to make judgments and remember incidents clearly.
The minister mentioned covert medication—on the path to improving care and treatment, much more work needs to be done in that area, as "Remember, I'm still me" highlights. I hope that the minister will consider having one GP practice per care home, given that people are placed in care homes from a wide geographic area and are unlikely to see their own doctor following admission. That should help to reduce remote prescribing—sometimes of covert medicines—by GPs.
The Scottish Conservatives support the Government's motion and the Liberal amendment—to ensure that spring is in April. The Labour amendment is very specific about dementia advisers and specialist staff; we do not wish to be too prescriptive, and we would prefer to concentrate on better dementia training for all appropriate staff.
The Parliament has a good track record in its legislative endeavours with regard to care of the elderly and other vulnerable groups. However, as we know, legislation is not a panacea, and the debate is about what happens on the ground.
We all appreciate that dementia is a dreadful degenerative disease that is distressing for the individual—who may well have insights, particularly in the early stages of the disease—and for their family and close friends. However, members have recounted instances—I think we have all heard of such instances—of people who are simply parked in a chair and left to sit there all day, imprisoned in their own home or in a care home. I note that 40 per cent of those with dementia are in care homes, which means that 60 per cent are being cared for at home, often by an elderly spouse who does not even know that they are a carer but just gets on with it. The minister was quite right to raise that issue.
The onset of dementia can be delayed by appropriate therapies and medication, but I note that most of the funding is United Kingdom-reserved. However, I welcome the fact that the Government has put in substantial funding—I believe £1 million is to be spent on dementia expert groups. That is the approach we must take—we must not always be firefighting in the chamber; instead, we should seek things that will assist in defending against, and perhaps eventually eradicating, dementia.
I wonder why only some 30,000 of the 66,000 people who are estimated to have dementia are on GPs' books, as the minister said. I suspect that in some cases the family are protecting the individual from being diagnosed, either knowingly or simply by covering up, in the gentlest of fashions, the results of increasing memory loss by helping them more than they used to. Such behaviour has a lot to do with stigma, which used to be attached to cancer, but mercifully no longer is. We have faced up to that darkness, but people still attach stigma to dementia or Alzheimer's. Once we get over that stigma, perhaps more people will begin to recognise that dementia is what an elderly parent or spouse is facing.
I have looked at the Alzheimer Scotland's assessment of current provision. It is a fair assessment, as I know from looking at my own case book, that notes that councils have waiting lists for day care and that people with dementia are not always being assisted to carry out tasks so that they can maintain skills and a level of independence and self-respect—the warehousing to which Cathy Jamieson referred.
There has been a tightening of thresholds in many councils in relation to the provision of funds and the number of hours that are provided per service. I say to Mary Scanlon—I will make the only political point in the debate—that the UK Government spends millions of pounds each week on wars that it will never win, and I would rather that it took our troops out of Iraq and Afghanistan and used that money UK-wide to provide proper health care services for our vulnerable and elderly. That would be a far better use of our tax money.
Members have referred to medication. We have been down that road before with the pill in the sandwich—covert medication—or medication that is not logged and never reviewed and which can leave people sitting unnecessarily inanimate and unable to partake in any events round about them. I support Mary Scanlon's proposition that GPs be allocated to care homes, so that people do not have that anonymity.
As others have said, in looking at a strategy, we need to see the person. As one gets older—and I say this as a pensioner—one appears to become invisible. People look at you and say, "There goes a pensioner." Well, I will not be called a pensioner; I am Christine Grahame, I am me, I am very difficult, and I will stay like that. It is the same for everyone—we are all individuals and I hope that we are all difficult and stay like that. The trouble for someone who is identified as having dementia is that they are seen as a dementia sufferer: they lose all their character and their sense of who they are. However, there is no reason why people should treat them in that way.
Things that do not cost money are terribly important—for example, our attitudes towards those who suffer from dementia. I agree with Ross Finnie: if we do it right for the individual, we do it right for the community.
Does the member agree that the issues of attitude and culture feed into questions of covert medication, people being left to sit and so forth?
Indeed. That is why I said that I agreed with Ross Finnie on the need to get it right for the individual. I am not turning into a Liberal Democrat, but—
You have a long way to go.
He does not want me. I withdraw my application.
Each person with dementia is unique. They should have a choice even in simple matters such as whether they want milk or sugar in their tea. Their carers should find that out, rather than making assumptions. Someone with dementia should not be called by their first name if they do not like that. Equally, they should not be touched if they do not like that, and people should not make assumptions about how they should dress. Little things matter a great deal.
I turn to cultural values. If a carer is dealing with someone from another culture and they are not sure what to do, they should find out. Carers should not do things in a way that would be an affront to someone. There is a simple rule in all of this: we should act with courtesy at all times. The person may not understand what is being done, but their family will take pleasure in such courtesy. The simple acts of saying please and thank you or asking, "What would you like?" are important. Many of us will not have experienced that sort of attitude in relation to the care of our family members. Indeed, many of us know that only when we put our foot down did things change. Once one person begins to work in a professional way, their attitude can become infectious, even to the point that it becomes good practice.
I ask members to reflect on the fact that, as we participate in this debate, there are elderly people with dementia in care homes and hospitals across Scotland who, despite being physically able, have not been outside for two years. They sit disinterested or sleep in a lounge with a television blaring out, having been given inappropriate medication to sedate them and manage their illness. Members have spoken in those terms, but I find such descriptions incredibly shocking.
We are talking not about the overexaggerated writings of an MSP or freelance journalist who is out to grab a quick headline story; we are talking about the sad facts of life for some elderly people with dementia. We know those facts from the work of professionals who have revealed them in their detailed inspections of care delivery over a period of time in a range of settings across Scotland. In all, some 30 care homes have been inspected, including those that, at first glance, looked tempting enough to make people believe that a reasonable standard of care was provided within. The authors of "Remember, I'm still me" from the Mental Welfare Commission for Scotland and the care commission concluded that, in more than 50 per cent of care homes, staff had to be told that the care that they provided was not good enough.
Just one example of a system failure would be one too many. Regrettably, the fact is that "Remember, I'm still me" is the most recent in a long line of professional reports on how we as a society are failing our older people. My colleague Cathy Jamieson referred to the "Older and Wiser" report. Following unannounced visits to 16 hospital wards, its authors found that people with dementia were confined to a life indoors and that there were major inadequacies in the physical environment in which the older people not only lived but ended their lives.
"Pressure for change", a care commission report, found that in every single home that it investigated there were serious failings in the standards of care in relation to the prevention and treatment of pressure ulcers, which are especially distressing for people with dementia, who might lack the capacity to articulate their distress and discomfort.
"My Home Life", a Help the Aged report, suggested that half the people in care homes spend most of their time asleep, socially withdrawn or inactive.
Perhaps most heartbreaking of all were the many examples in "Hungry to be Heard"—an Age Concern England document that was submitted as part of the consultation on the English dementia strategy—of people in homes being given inadequate assistance with eating and drinking.
I recognise that not all care is as bad as that described in those examples, but I know that there are failings, even in homes that we think are providing a reasonable level of care. I make no apology today for calling for change that is matched by appropriate resources, as set out in our amendment.
I welcome the debate. I also welcome the minister's commitment to have the strategy in place by spring, or Easter, 2010 and to take on board the points raised by colleagues today. Given the scale of the problem that we face, the strategy is long overdue.
The minister mentioned the cost to the economy. It is valid to put such figures on the record, but no amount of money can compensate for the human tragedy that this disease represents for families who have been robbed of twilight years with their loved ones.
That brings me to the Alzheimer's consultation, which was held over the summer to inform the work of the cross-party group on Alzheimer's on a charter of rights. I clarify for Ross Finnie that that work is separate from the dementia strategy. I hope that our amendment gives voice to the views that were expressed by hundreds of stakeholders in that consultation on what carers, sufferers and professionals would like from a charter of rights and a strategy. The minister knows about the work that the cross-party group is doing on finalising the charter of rights. I hope that the charter and our views will inform the Government's developing strategy.
There simply is not the time to go into the detail of the results of the consultation, but it is fair to say that one of the recurring themes was the importance of training and raising professional awareness. I want to share a few representative quotations from carers. One said:
"I would like to see compulsory training on dementia for all staff providing personal care in care homes".
That is not rocket science; it is simple, but it is just not happening.
Another said:
"I would like to try to change the way of thinking and doing of the care home that my mum stays in."
Another said:
"Going into care should be a positive choice, at the moment it is a last resort."
Someone with dementia, who still had capacity and communication ability, and who was perhaps speaking up for others, said:
"I would like to be treated as a person."
People see the need for change, but they still feel powerless to act, which has to change.
Staff training and their understanding of dementia are seriously inadequate. All too often, care is undertaken by the lowest-paid and least-trained staff. There is also a view that someone who cares for people who are physically frail is somehow qualified to deal with people who are mentally frail. Such thinking is akin to asking someone with a first aid certificate to be responsible for a patient on life support—it is simply not appropriate. It would not happen in any other discipline or with any other client group, yet we allow it to happen to some of the most vulnerable in society.
You should be finishing now.
I wanted to say something about specialist dementia carers and dementia advisers, which people called for in the consultation, but I simply do not have time.
Today is a starting point. Setting out a strategy on paper is the easy bit; implementing it, resourcing it and effecting real change is the hard bit. Each of us has a role to play in ensuring that that happens. I believe that there is a will throughout the chamber to change things.
I am sorry, Ms Oldfather, but you have to finish.
We have a responsibility to ensure that reports such as those that I mentioned are consigned to the history books where they belong and that, in a modern Scotland, there is a culture of change that will sweep away the stigma. We must speak up for our most vulnerable citizens.
I pay tribute to Irene Oldfather for the sincerity that she shows on this issue. We sometimes travel together on the train from Glasgow to Edinburgh and we have long conversations about it. I know that her heart is very much in it. Christine Grahame is indeed a pensioner, and today is her birthday, but I will not tell members what age she is.
As convener of the cross-party group on older people, age and ageing, today's subject is of particular interest to me—as it is to fellow members of the cross-party group and to others. I take this opportunity to thank the minister for her attendance at today's group meeting, at which we discussed the forthcoming Scottish older people's assembly, which is to be held on 2 October in the Parliament. I hope that many attending the debate today, whether members or people in the public gallery, will have the opportunity to attend that assembly, which I think will be very important.
It has long been a goal of the cross-party group and other interested groups and individuals for older people's voices to be heard and for their needs to be addressed, and I am happy to say that I believe we are making real progress in that regard. Today's debate and the forthcoming publication of the Government's dementia strategy demonstrate that older people's voices are at last beginning to be heard. The older people's assembly will serve as the perfect platform for that to happen. Much of the proposed programme is directly related to the needs of an ageing population, its health, wellbeing and quality of life, and I hope that the older people's assembly will have the opportunity to feed into the Government's dementia strategy. Perhaps in her winding-up speech the minister will confirm that that will happen.
Much has been said about the medical causes of and possible remedies for the syndrome. Although remedies are, of course, to be welcomed, we must ensure that any strategy aims to provide whatever support is necessary to delay or minimise the onset and symptoms of dementia. A key aspect is the need for older people to lead active, engaging and rewarding lives, at home and in care homes—it is important that we address the situation in care homes in that regard.
I will give one example of why it is very important for people to lead an active life, whether in their home or in a care home. I regularly have the pleasure of visiting the Wing Hong Chinese elderly centre in Garnethill in Glasgow, where I frequently come off second-best at table tennis. Members might not think that that is very surprising, given my size and stature, but someone with a much greater stature—the First Minister—has also found himself on the wrong end of a ping-pong ball at the centre, having lost to a gentleman of 93 years of age. I have seen some of the most mentally and physically active older people I have ever come across in that centre. They are absolutely amazing—93 years old, on a treadmill, playing ping-pong or checkers, or out digging the garden. That is fantastic.
We need to focus on the subject of keeping older people mentally and physically positive in their outlooks. I believe that, as a direct result of their being mentally and physically active, older people can lead as full a life as possible and remain as full of life as possible. If we are to achieve our aim of improving the lives of older people, we must seriously consider how we can provide the stimulation and activity that are needed to promote healthy lives and mental wellbeing. I hope that the minister can address that point, which I know will be mentioned in the strategy. She said that she will take on board the issues that we raise, and it might be a good idea for her to visit the Wing Hong group and perhaps get a game of table tennis with that 93-year-old man, too.
As Irene Oldfather and others have said, there are people sitting in care homes doing nothing. There are gardens and equipment at some homes that are never used, and that situation has to be addressed seriously. Such cases have been brought to me, and I have seen others with my own eyes. I have visited care homes, not just when my mother was in one but through the cross-party group on older people, age and ageing. I have been shocked and angered to see some of the care that people receive. It is admirable to look towards better regulation and a higher standard of care in the sector—I would welcome those. However, I believe that it is by empowering older people—the service users in care homes—that we can achieve some form of lasting change. I would like the minister to talk about that when she sums up.
I recently spoke to Professor Alan Miller, the chair of the Scottish Human Rights Commission, about the human rights situation in many care homes. I was encouraged by the commitment of the commission to empowering people in care homes to understand their rights. We discussed the establishment of a human rights champion, who would be nominated by their peers and would ensure that everyone in the peer group understood their rights and had representation. I would be interested to hear the minister's thoughts on the idea, which she might feed into the strategy.
Dementia can affect any of us and it is imperative that there should be early diagnosis and treatment. We must improve care, treatment and support for people who have dementia and the people who care for them. As Irene Oldfather, Christine Grahame and Mary Scanlon said, we must ensure that there is understanding and knowledge of dementia, not just among the medical profession but among people who care for or simply know people who have the condition. Then we will be able to have a proper strategy that we can work with.
Time is such that I will have to cut members off when they reach their time limits.
Several years ago I worked in social work and saw at first hand the devastating effect that dementia can have on individuals and the loved ones who often care for them. It was scary to see how people who were fit and healthy in every other respect seemed to be cut off from their previous lives, and it was heartbreaking to watch the relatives try to come to terms with a very different person.
It is estimated that almost 70,000 people in Scotland have dementia. Given the lack of co-ordinated knowledge, the figure could easily be higher. By dint of simple demographics, we know that the figure will increase substantially during the next 20 years.
There are two aspects to the issue. They are intrinsically linked and one is just as important as the other. One aspect is how we organise our sophisticated health care regime to provide the best in care and stimulation for the unfortunate victims of dementia; the other is how we support the loved ones who carry the enormous burden of care. All too often we do those people a disservice and we leave them feeling confused and isolated. If we do not radically improve our treatment of carers it will be impossible—I stress "impossible"—adequately to care for the individuals who can no longer safely care for themselves.
As the recent reports by the Scottish Commission for the Regulation of Care and the Mental Welfare Commission for Scotland demonstrated, and indeed as too many reports have demonstrated, institutional care all too often falls short of providing the dignity that people need and deserve. Not institutions but individuals—relatives, friends and loved ones—deliver the care and dignity that are needed, but they can do so with any hope of having a life of their own only if we support them, place full value on their efforts and acknowledge that without them there can be no dignified solution for people who have this awful condition.
During the past few weeks we have heard much from various quarters about our nation's values, in particular compassion. One could be forgiven for thinking that we are a bit too eager to praise ourselves when we read the reports from the care commission and the MWC. The findings that Irene Oldfather mentioned are worth repeating. Some patients have not crossed their hospital's threshold for two years. Is that not a form of imprisonment? Half the residents in the care homes that the care commission considered do not have the opportunity to be taken outside. Every home that the care commission visited was failing in its treatment of bedsores. In nearly a third of homes, patients are covertly given medicine to manage their conditions. In this country of plenty we cannot go through a day without hearing about human rights. Which eager set of lawyers is looking after the human rights of people whom we are medicating without their knowledge or permission?
Clearly, many things need to be done and there is a long way to go before we can pat ourselves on the back. A national strategy is one of those things, but it is only one of them. National strategies can, of course, be doubled-edged swords. I know from bitter experience that we are good at strategies. Indeed, we are excellent at glossy strategies. They come in very handy when we demonstrate how forward thinking we are and are an excellent aid when we tell conferences attended by the great and the good that we are well ahead of the curve but, all too often, they do not live up to the hype. We all know that actions make the difference—sustained, determined actions that are rooted in the right to care and dignity. Let us judge ourselves on those and not only on the production of yet another well-meant, glossy document.
I concur with Mr Finnie's concerns about the spring. Our dear friends in the civil service can use the seasons as very elastic concepts indeed. Let us hope that we are talking about early spring for the production of the strategy.
I have been impressed by the speeches of those members of all parties who have preceded me in the debate. It has been an excellent debate and many knowledgeable speeches have been made.
It has frequently and famously been said that a society is to be judged by how it treats its old people. I think that we all agree that Scotland has a long way to go in its treatment of dementia sufferers.
Dementia affects more and more people. In part, it is a product of improved medical services and better lifestyles that lead to a longer lifespan, which is good in many ways. We heard about the estimated 69,500 sufferers. That figure is set to rise to 127,000 by 2031, which is not all that far away, and 6 per cent of people over 65 are affected. On that measure, eight of our number in the Parliament can expect to be affected by dementia in future.
That is an illustration of the national numbers, but the figures are also stark at local level. In Glasgow, there are an estimated 6,676 sufferers—I do not know how such precise estimates are made, but those are the figures—and, in South Lanarkshire, 3,390. A percentage of those people are also under 65, which has not been much stressed. The numbers pose great challenges, not only for health and social care services but, more particularly and more immediately, for families and carers. Tom McCabe was right to dwell on the importance of support for carers, who hold together not only the whole system but the health of individuals.
In June, we received the report called "Remember, I'm still me"—produced jointly by the care commission and the Mental Welfare Commission for Scotland—on the provision of care in residential homes. It seemed to me at the time, and still does today, that it was one of the few, stark, totemic reports that are immediately and obviously definitive. I lodged a motion and asked some parliamentary questions on the matter, which is little enough. I am pleased that the Scottish Government has accepted the report in its entirety and is to produce a dementia strategy, although it is disappointing that it has been deferred until the spring. There is a great deal for the strategy to do. Like most things, it will not be cost free, but a good deal of the challenge is to do things differently and better. There are a number of big must-dos.
We must change culture and attitude. Irene Oldfather talked about changing the way that we think and do. That is absolutely right. As the report demonstrates, sufferers remain people. They must, as far as possible, continue to make decisions and be responsible for their own lives although, as the condition develops, they cannot always continue to be entirely independent. The responsible carer is affected profoundly, which can be difficult, demanding and frustrating for family, medical and social care staff alike.
The disease alters people's perspective and their attitude to the world and can be accompanied by frustration and aggression. Sufferers can get lost and disoriented in place and time. They can be vulnerable to people who come to the door or who ring up on the phone selling windows or kitchens or, even worse, with more fraudulent intent in mind.
There can be a bizarre side. Somebody told me not so long ago that there are no smoking problems in care homes because some people forget that they ever smoked. There are, however, big problems with people forgetting to turn off the cooker, put on the gas fire properly or keep themselves warm. Accidental fires are an issue.
None of that is easy to handle, but we need more understanding, expertise and respect. I heard of a case recently involving an elderly man suffering from dementia. He was a private person and was quiet and content in his own home, but he did not like the intrusion of carers into his personal space, so he became agitated and aggressive when they came to look after him, which led to the withdrawal of the care and the suggestion that it was time for him to go into a home. I do not want to make a judgment on that—I am no expert on such matters—but it seems to me that training and understanding were required, rather than the man moving into a care home, with all the issues that that involves.
Attitude underlies other issues. No less than one third of those surveyed for the report were taking anti-psychotic medication. That is helpful in some cases, but it is known to increase the risk of stroke. The official advice is that it should not be prescribed for mild or moderate psychotic symptoms. Many people were not having their medication reviewed and—Mary Scanlon touched on this—medication was being prescribed without the person being seen by a doctor. Few people had a planned annual GP check. Linked to that is the covert use of medication, from which all sorts of other issues arise, such as the lack of adequate recording of ways in which medication is used to manage challenging behaviour. The plain fact is that many care home staff, even managers, often have a poor understanding of the legal safeguards and powers, or the role of welfare guardians, which is basic stuff for anyone working in the field.
There is also the issue of planned activity—or the lack of it, I should say—outside the care home. When doors are locked, it is rare for personal plans to refer to that or to why that was the case. To put it another way, lots of elderly people are locked up in their rooms without justification. The key message is that activities that are tailored to their needs must be an integral part of a person's life in residential care.
There are many other issues in that regard, such as transport facilities, support for voluntary groups and the need for psychiatric and mental health support for people over 65, which is an issue across the country. There is much to be done in that regard. Let it truly and increasingly be said of our society that old people, particularly those with dementia, are comfortable, stimulated and cared for in the Scotland of the 21st century. That is the challenge for the strategy.
Like Irene Oldfather, I come to the issue from the personal situation of having had a relative who suffered from dementia. My mother suffered from dementia for several years before she died, so I hope that I do not introduce too much emotion into my speech. It was ironic that she died suffering from dementia. When I was a child we did not have the awareness that we have now of Alzheimer's and dementia, and I recall elderly relatives who would be recognised as getting gey raivelled or being a bit dottled. At that time, they usually died of something else before dementia became the main issue. I remember their instructing us, because they were practical farmers, that we were just to take them out. As members can imagine, that was because they did not want to be seen in that state. Of course, doing what they suggested was totally out of the question, and I will not stray into the end-of-life debate today. However, that was their attitude.
We do not really know what goes on in the minds of dementia sufferers. Like other sufferers, my mother had moments of complete lucidity, but would then retreat into the dark world of dementia. That is why research is so important, as is early diagnosis, and making family members and others aware of the early signs of dementia. I know that the stroke leaflet has been well received. People have mentioned to us that it has come through their door and that, having read it, they can now recognise the signs of stroke. I ask the minister whether something similar can be done for dementia.
It is important, too, to recognise the different forms of dementia—vascular dementia is different from Alzheimer's disease—and that sufferers require different medical treatment and care strategies. In addition, elderly and not-so-elderly sufferers should be allowed, as far as possible, to stay in their own environment for as long as possible. That is not possible in many cases because their behaviour means that their dignity and safety is compromised, so the security of a care home environment is the only option.
Like others who have been directly affected, I know the huge burden that is put on carers of dementia sufferers. We owe a great deal of gratitude to all those who are involved in providing such care. It is absolutely vital that on-going training is made available for carers and others who are involved in the running of care homes and day care centres.
As more research into dementia is done, more guidance becomes available on how to enhance the quality of life of sufferers. As the minister and others have mentioned, that is not only about diet and physical activity but how to provide mental stimulation. As others have said, it is not acceptable that any care home resident should be left sitting all day in the same chair watching television. Different and stimulating environments should be provided through, for example, outings and taking people for fresh air in the garden. In the care homes that I have visited, I have noticed how important it is to have many people who come in as, for example, a volunteer manicurist or hairdresser. Encouraging relatives to come in to give manicures or facials or to talk to the old people about old photographs is an important way of enhancing the quality of life of dementia sufferers.
Many members have mentioned the widespread and inappropriate prescription of medication, which is totally unacceptable. In some incidents, such as where the patient is distressed and wandering, it may be necessary and in the patient's own interests to prescribe antipsychotic drugs. However, as Robert Brown and others said, such prescriptions should be made only after consultation with the patient's GP.
I commend the work that is being done by the University of Aberdeen, which is at the forefront of research into Alzheimer's and dementia. A team that is headed by Professor Tibor Harkany is studying how nerve cells communicate with each other and is looking for biomarkers—biological clues—that might diagnose people who have the condition. Professor Harkany's team is trying to find out what causes brain cells to become damaged in Alzheimer's sufferers. In looking for new ways to diagnose the disease, the team is looking for new targets at which future drug treatments could be aimed.
I also want to mention groups such as Banchory's Forget Me Not Club, which allows carers and others to have some free time and lets dementia sufferers meet and be involved in different social interactions. Local schools raise funds for that club and encourage pupils to volunteer to help out there. I also want to mention—
I am afraid that the member's time is up. I am sorry.
Developing a national strategy for mental health services that shifts the balance of care is important but, as members have said, it is not enough by itself. Such a strategy needs to be reflected in action on the ground. That has certainly been the case at Aberdeen's Royal Cornhill hospital, where care for people with dementia has moved into the community, to the benefit of all concerned.
Woodgrove nursing home has been a very good symbol of that change. Built 12 years ago in what were the grounds of Cornhill hospital, operated by Voluntary Service Aberdeen with support from the local authority and funded by transferred NHS resources worth around £800,000 a year, Woodgrove nursing home has been involved in providing specialised nursing care to people with dementia outwith a hospital setting. Woodgrove has been an exemplar of shifting the balance of care.
When I visited the dementia services development centre at the University of Stirling a few years ago, I was struck by the enthusiasm of Professor June Andrews and her colleagues for practical examples of specialised care such as Woodgrove. Indeed, the dementia services development centre was involved in setting up Woodgrove as a beacon project in specialised care. That positive view was also expressed clearly by the care commission in its 2005 report, which gave a long list of strengths at Woodgrove and few areas where improvement was required. There was praise from families for the care provided by VSA and the helpful attitude of staff.
Sadly, as the minister will know, that exemplary provision is no more. I wrote to ministers in July last year after I had been contacted by relatives of residents at Woodgrove, who were concerned about plans to downgrade the home from provider of specialist care to provider of general care. I pointed out that Woodgrove had been custom built for precisely that client group, and that it had become home to people with severe dementia who benefited hugely from the dedication and expertise of the nursing staff, and who would otherwise be likely to end up back in hospital. The minister may recall her reply of 31 July last year, in which she said that it was
"outwith the remit of the Scottish Government to intervene in such decisions."
VSA's decision to downgrade Woodgrove was taken on financial grounds. In the midst of its financial crisis, Aberdeen City Council was not willing to continue to provide the funding that a specialist home required, despite the transfer of national health service resources for that purpose. VSA was not willing to continue to fill the funding gap.
Does the member accept that the closure of Woodgrove by VSA has nothing to do with the council and that the council's position on the matter has never changed? Does he also accept that Woodgrove is now not up to the standard that is required for dementia sufferers and that in Aberdeen we have a new facility called Rubislaw Park, where there are 40 beds specifically for sufferers of the condition?
I do not accept for a moment that the closure of a home that receives all its funding for the care of people with dementia from Aberdeen City Council through the transfer of NHS resources has nothing to do with the city council; it is directly to do with the city council.
Sadly, no one was prepared to take responsibility for addressing the issue. VSA went ahead and notified the care commission, on 18 December last year, that it would no longer provide specialist care at Woodgrove. Thankfully, it did not propose to remove all 40 residents of Woodgrove, many of whom had severe dementia, but in spite of the best efforts of the staff union, Unite, the downgrading brought with it the loss of a number of excellent and experienced nurses, while the client group remained broadly the same.
None of the agencies concerned acted to prevent the downgrading and none of them found a way to deal with the problems that that created. Instead, there has been a failure to agree among the agencies that are responsible for setting the standards, providing the funding and delivering the care for residents. Aberdeen City Council wanted to base funding on individual assessments of residents' needs. VSA argued for staffing that reflected a mix of specialised and general care requirements. The care commission was extremely concerned about the impact of the loss of experienced nursing staff and insisted on a staffing schedule that prioritised the welfare of those residents who continued to suffer from severe dementia.
Last week, the board of VSA decided to abandon its negotiations and announced its decision to close Woodgrove in three months' time, apparently without giving prior notice to anyone else. That news certainly came as a bolt from the blue for residents and their families, who had been told that adequate care could be maintained at Woodgrove despite its downgrading. That has proved to be wrong. They had also been told that there would be no need to uproot their loved ones—that, too, has proved to be wrong.
Over the past few days, I have spoken to all the agencies involved, including the city council—which has said that it will make contact with relatives—the NHS, the care commission and VSA. None of them has said that the decision to close Woodgrove was its responsibility; they have all said that it was down to someone else. However, none of them has denied that Woodgrove's closure is a tragedy for the development of specialised care for people with dementia and for the implementation of a dementia strategy. They have all said that they are willing to keep talking to find a way to resolve the issues and, hopefully, to reach a different outcome.
Of course, it would be useful if the minister were to clarify where responsibility for such decisions ultimately lies but, above all, I want to take the opportunity to ask her if she will now intervene—not to overrule the decisions of voluntary organisations or local councils, but to bring together all the parties involved in the fiasco and to find a solution. Woodgrove has been a symbol of shifting the balance of care. I want it to be that again, not a symbol of a chasm between strategy and implementation.
I am afraid that I must restrict the remaining two speakers in the open debate to three minutes each.
The sad truth is that we have not been very good at caring for folk with dementia. All of us must have met constituents for whom support has, sadly, been ineffective or even totally lacking when it has been most needed. All of us must have met the relative who was not allowed to sit in on a consultation—patient confidentiality, you know—despite the fact that, on leaving the consulting room, the patient could not remember a single word that had been said. Community care has been totally out of sync with the care that has been provided in hospital, transport home has not arrived or has kept patients waiting for hours, and there has been a lack of moral support for spouses or children who have found that caring has taken up more and more of their lives, and has interfered with their work, leisure activities and even their relationships.
I will put forward one or two thoughts on the subject. First, what has been proposed is great, but we must avoid taking an approach that is a little top down. The stakeholders who have been mentioned—local government, working groups, regulatory bodies and so on—are important, but they are not nearly as important as the real experts: those with dementia and those who are close to them who care for them. There can be HEAT targets, strategies and so on, but we will achieve little unless we have the confidence of those who are intimately involved.
Confidence is important. I have mentioned before in the chamber that when I started work as a general practitioner in Edinburgh, we had an enlightened specialist in geriatric medicine, Professor Williamson, who made a habit of reassuring carers that the moment they encountered difficulties, either he or a member of his team would immediately visit and sort things out. They did so, and the result was that the carers looked after relatives at home for longer and kept them out of hospital.
People with dementia and, perhaps more important, those involved in their day-to-day care must not only be given support; they must be used as a valuable source of local specialist advice. They are the specialists. What often goes wrong in the field is not the good intention, the well-meaning strategy or the comprehensive service; rather, tiny, vital flaws often prevent good-quality support from being given.
I have mentioned a few things that can go wrong. Those things are often due simply to slight errors in co-ordination or a lack of foresight. Local managers and administrators should cease regarding comments when such incidents occur as complaints; rather, they should treat them as vital information that will inform their future actions. I know carers who have loads of useful information to pass on but have not had the opportunity to do so. In dementia care more than in almost any other field, the devil is in the detail, so the detail demands our intensive scrutiny.
Finally, I acknowledge the contribution to the debate of earlier speakers who, by taking far longer than their allocated time, managed to curtail the final speeches in the open debate to three minutes each. I am sure that what they had to say was much more important than what we had to say.
As a member of the cross-party group on Alzheimer's, I, too, pay tribute to Irene Oldfather for all the work that she has undertaken for people throughout Scotland who suffer from Alzheimer's.
It has been predicted that the number of people in Fife who have dementia will increase by around 100 per cent by 2030, to 11,000. That presents great challenges for health and social care in Fife. Dementia and related conditions do not come about overnight. Residents and their families have to be managed and supported through the processes of change.
Continuity is needed in social care. Dementia sufferers should receive all the care that they require continuously without the disruption of the consideration of additional support or funding. I urge the Scottish Government to use the upcoming dementia strategy as an opportunity to provide local authorities with adequate funds so that residents are not disadvantaged.
Fife Council's policy of increased charges and the eligibility criteria changes that have been made have exacerbated an increasingly difficult situation in my constituency and throughout Fife. They have resulted in 500 fewer people in Fife receiving much-needed support.
Funding has yet to be announced for a dementia strategy in Scotland, but Alzheimer Scotland has estimated that a minimum of £15 million is required to match the equivalent funding that has been secured in England. If dementia is truly a national priority for the Scottish Government, a significant financial commitment must be made to help to improve the quality of the care and treatment of those affected. As a member of the cross-party group on Alzheimer's, I urge the Scottish Government to acknowledge the breadth and depth of the consultation on the charter of rights by Irene Oldfather and Alzheimer Scotland, and to consider seriously its content on funding issues and care homes. Purpose-designed accommodation is important in that respect, as is the quality of staff training.
The cross-party group on Alzheimer's has considered a number of alternatives to the current care home model to enhance care for people with dementia. I hope that the Scottish Government will consider embedding those in its strategy. Elderly people will benefit from a move away from the congregation of many elderly people in one home towards a model that involves core and clusters. A not-for-profit model could be considered. I hope that the minister will take a serious look at that. I also believe that a serious look should be taken at co-operative solutions and urge the minister to ask Co-operative Development Scotland to have a serious look at how those could be taken forward. Staff in care homes are, all too often, paid low wages. Many homes use a high number of bank staff and there is inappropriate training, as other members have said.
The Scottish Government has a duty to the 67,000 people in Scotland who have dementia to address the issues of funding and the quality of care that is provided in our care homes. It also has a duty to the next generation of elderly people to incorporate into the dementia strategy provisions to ensure the best possible care.
The debate has been constructive and, by and large, consensual. The only political point was perhaps made by Christine Grahame, who had to leave the chamber after her speech in order to go back to her birthday party.
Mary Scanlon made an interesting point, which was subsequently developed, about the inconsistencies in the levels of care and financial support that are provided. The matter is not often given enough attention.
I acknowledge Irene Oldfather's long-held and sincere contribution to the development of a dementia strategy. She narrated, at some length, a range of examples—some very up to date—of the difficulties that are faced by dementia sufferers. Other members did likewise, which underlined the litany of failure that was recognised in the report "Remember, I'm still me." We can continue, regrettably, to bring to the minister examples from our constituencies that only emphasise the fact that "Remember, I'm still me" was real and that the whole Parliament has an obligation to address the problems. The sooner that we do so, the better.
To avoid misunderstanding, I advise Irene Oldfather that I was aware that the Alzheimer Scotland work on the consultation was done for the cross-party group. The point that I was trying to make was that, as Alzheimer Scotland is part of the ministerial group, I would be astonished if it did not communicate the outcome of that work to the Government. Nevertheless, she was right to point that out just in case it does not.
Tom McCabe was the first to emphasise—although others had referred to it—the need for support for carers. The point was taken up by Maureen Watt, Robert Brown and Ian McKee. In other debates, we have all emphasised the important role that carers play in our society and the fact that, all too often, they are ignored in the equation. Ian McKee cited the example of a colleague who gave specific support to carers, which had a positive effect and impact on the patients. That issue must be looked at.
The debate has been useful, but it does not take us much further. We have had the opportunity to restate, with some clarity and unity, our deep concern for the continuing litany of failure that exists regarding the care of those who have dementia. We are happy to support the Government's work and the direction of travel, but that work must be carried out with urgency and determination so that spring does not become an elastic definition. Next April, we must know what is happening because we all share the minister's deep concerns. We need to know what the Government's plan is and how it will be implemented.
Like many, I owe a great debt to my grandmother. She had the gift of storytelling and a lifelong interest in events and current affairs. Her memories, vividly retold, of the evacuation during the war of her young family through treacherous waters by convoy to Canada, of the abdication, of the loss of the Titanic and of her brother's experiences in Moscow during the Bolshevik revolution, with summary executions and bodies strung up from almost every lamp post, were a fascinating window on nearly a century of history.
My grandmother could be rather startling, too. Her matter-of-fact, inside knowledge that she knew—with a certainty that most commentators lacked—that Labour would not win the 1992 election was conveyed to me over lunch in a popular restaurant. She said, "Jackson, Neil Kinnock was never going to win. After all, in the final analysis, no one was going to vote for someone to be Prime Minister who couldn't buy himself a decent suit." Maybe it really was the suit what won it. More acerbic was her view that Alex Salmond is so smug he would cheerfully drink his own bathwater. That is now accepted universally by the First Minister's opponents and—as I know from conversations in this place—by some of his friends, too.
Therefore, it has rested on my conscience since my grandmother's passing in 1996 that her final few years were blighted by a constant battle with dementia, broken up by occasional blinding shafts of lucidity, when she would experience the knowledge that this was so. It seemed to me that, surely, if there could be remission—however brief—there could equally be a cure. On her 90th birthday, when I asked her how she felt to be 90, she replied, "I wouldn't recommend it."
There is no disguising the affluent circumstances of my own upbringing and the ability that that gave my family to do all that we could for her in those final years. However, it was not lost on me that there were countless others for whom similar circumstances must have been wretched. Therefore, although we must be exceptionally careful not to attach blame to any individual in the business of caring, who can be surprised by the findings of the report this year of the Mental Welfare Commission and the care commission? That report bleeds into our consciences because we all know that we all knew. Throughout the debate, members of all parties have made references to experiences that must surely stop us all short. Cathy Jamieson and Mary Scanlon gave graphic examples in their powerful opening speeches. The minister was right to call the report "deeply shocking". However, candidly, did any one of us expect to be other than deeply shocked?
Irene Oldfather emphasised the immediacy of the issues that we are discussing. I commend her on the breadth of her remarks, and note that the points that she made were firmly re-emphasised later by Tom McCabe.
Throughout the debate, and in the motion, tribute has been paid to numerous organisations that are doing heroic work. In particular, we must recognise the essential value of developments in understanding the simple changes that can be made to houses to allow many people to stay at home. That is not always possible but, where it is, it is invariably the preferred option of most people, and highly practical advances have been achieved, as those who visit the dementia services development centre at the University of Stirling will have witnessed.
However, our way forward must be on the basis of waking up all those whom we represent to some pretty unpalatable truths. In the first few weeks of joining this Parliament, I attended a dinner with members from all sides on the way forward with regard to dementia. As we live longer, so too will the incidence of dementia in all its forms increase. It will come to almost every family as the norm and not the exception. Further, we must add to that a phenomenon the reach of which we cannot yet foresee—the growing incidence of dementia in the population at a younger age. At that dinner, it was suggested that we cannot know what the longer-term consequences of drug misuse will be, even among recovered addicts and casual users. We were told with some certainty that there is no magic pill around the corner, and that whatever breakthrough we might hope to see could be at least 15 years away.
Scottish Conservatives welcome all that the Government has set forth today. However, it is set forth at the most troubling of times, for just as we appreciate the changing demographics and the longer survival of our fellow citizens, so too do we face an immediate decade of challenging austerity. That is singularly depressing, because it is an inescapable fact that a dementia strategy of which we can be proud has to be labour intensive, and labour-intensive care carries a huge financial cost. However, there is no room for any additional huge financial cost. To find the resource, we will have to examine our health service with a determination to find treatments and proactive health care approaches that reduce the existing burdens elsewhere. Let me set aside for a moment any party-political point and say that, although I do not support some of the Government's plans to tackle the scourge of alcohol consumption, I accept that ministers are pursuing those policies precisely because they recognise the huge burden that alcoholism places on the national health service, and the need to tackle that problem if we are to match our fine words on dementia with effective actions.
Alcohol is not the only issue that must be dealt with. We need to be brave with NHS reform if we are to release the resources that treatment of those with dementia might require. The worry is that if we do not, the financial pressures might prove so great that our flagship achievement—free personal care for the elderly—might itself come under intense scrutiny.
I said earlier that we had to wake people up to unpalatable truths. I think that we might need to be blunt and honest about this: of course Government wants to do more and of course as politicians we recognise the need for such action. However, Scotland needs to accept that our living longer means that every family and many of those who have lived or have raised children alone will have to anticipate a direct experience of a loved one in need of care. Social patterns mean that fewer people will live together to take care of one another, and we can easily underestimate the importance of that reality. Care is something that we will all have to share. It cannot become the sole responsibility of the state, and to pretend that it can is to deny an open discussion on the future shape of our community life. We need to be prepared and that cannot be achieved by our being surprised by events; we need to be educated in that respect.
I wish ministers well in that work. They will enjoy our support; after all, our approach must be consensual. However, it cannot be denied: the simple title of the carers handbook, "Coping with Dementia", might sum up the challenge but it belies its true scale.
I call Dr Richard Simpson. You may have no more than nine minutes.
Thank you very much, Presiding Officer.
I want to start with a little bit of the history of this issue, which I do not think has really been mentioned so far. Maureen Watt alluded to the fact that back in the 1960s depression and dementia were not understood as separate entities. It was not until Martin Roth—later Sir Martin Roth—produced in that decade his seminal paper showing depression to be different from dementia that we began to understand the process. Indeed, as Maureen Watt said, we now realise that there are multiple types of dementia and if we are to achieve what every member has said that they wish to achieve we must never forget that these are different entities that require different approaches. As a result, we need to look carefully at not only the individual but the conditions.
In that respect, Robert Brown pointed out that we should not forget about early dementia. Down's syndrome is still associated with a very early stage of dementia, and there are many people who have early dementia through a variety of causes. For example, CJD and its new variant can occur at any age.
In 1976, I was proud to be a member of the mental health programme planning group that led to the Timbury report, which was the first major report on dementia in Scotland. Professor Timbury warned that dementia would be the next great challenge to face after the scourges of heart disease and cancer began to be tackled significantly. However, given that he substantially underestimated the number of people who would be suffering from dementia today, I am not sure that the current projections of 110,000 or 114,000 people suffering from dementia in 2031 fully take into account the fact that life expectancy is increasing at the rate of about two and a half months a year and that the rates of dementia in older people are very significant.
The thrust of Professor Timbury's report was that people should be managed in the most domestic-style setting that was possible and that they and their families should be supported in that respect. The report was published at a time when the Conservatives were addressing the issue of long-term beds more or less by privatising them and putting them into the care home sector. As we know to our cost from reports such as "Remember, I'm still me", those care homes have never really been able to address the dementia problem to the extent that any of us would wish.
When Labour came to power in 1997, one of its priorities was to try to address the problems of mental health. I am not saying that we were totally successful across the board, but at least with the mental health framework we got stakeholders together and set targets for implementation.
In the time that we were in power with the Liberals, we achieved quite a lot. For example, the Scottish intercollegiate guidelines network guideline 22 in 1998 and the more comprehensive guideline 86 in 2006 are important in clinical terms. We also put in place the current legal framework. The provisions in the Adults with Incapacity (Scotland) Act 2000, the Mental Health (Care and Treatment) (Scotland) Act 2003 and the Adult Support and Protection (Scotland) Act 2007 were based on the Millan principles and are all important considerations, although I hope that in her review the minister will consider some aspects of the overall framework.
Members have mentioned the role of carers in the management of this condition; indeed, as Tom McCabe made clear, they are fundamental to the approach that we need. The commitment to respite care is important for carers and dementia patients. I pay tribute to the Government for the commitment of an additional 10,000 hours of respite care—I think that it is 10,000 hours.
It is weeks.
Sorry. I was not sure about that, which is why I had a question in my voice. It sounds much better as weeks. That is important.
As members have said, the Labour Government established the dementia services development centre at the University of Stirling, which is now under the leadership of Professor June Andrews. The centre has done an enormous amount to draw together a body of work and research on which to base practical implementation. I draw members' attention to the report "The Forth Valley Dementia Project", which describes one of the last projects that was funded by the Labour-Liberal Government. The project was based on bringing together staff, carers and others and the report is a vital document that should inform the strategy. More important, it has practical suggestions for implementation. There are 37 ideas for simple measures that could be adopted now and which have been adopted in Forth Valley NHS Board. There are another 34 ideas that were regarded as being more difficult to adopt, yet for each one the report indicates how it has been dealt with.
There are also seven ideas that staff regarded as difficult to introduce, but some of them have been introduced already. I pay tribute to the Government for that. It was suggested that we should have a HEAT target, although it was thought that that would be difficult and would take time. However, we now have a HEAT target. Another idea that was though to be difficult was the introduction of effective respite care and holidays for users, but that has also been funded. Two of the seven ideas that were thought to be difficult to implement have already been implemented.
Members from across the chamber have paid tribute to Irene Oldfather for her work in the field, which is only right. Her contribution and discussions in the Labour Party led us to lodge our amendment. We do not seek to disrupt the consensual approach that has been evident in the debate, but certain important points could be drawn from Alzheimer Scotland's work and in respect of advocacy. I was slightly disappointed by the minister's response that, although elements of that work are useful and important and will feed into the strategy, it does not provide much added value and that the proposed charter can be subsumed by the forthcoming patients' rights bill. I am not sure that that is the appropriate answer.
As Tom McCabe and others have said, simply having a strategy will not be enough. The issue is about implementation, and the devil in the detail of that implementation will be difficult. I will list some other concerns that members have raised. Christine Grahame referred to the need for early diagnosis and the lack of early support. An Audit Scotland report has made clear that the trend in social care is a steady move away from supporting people who have conditions in the early stages and towards supporting those who have complex and serious conditions. That is all very well, and I understand it in a situation of cost restraint, but it has the effect of leaving carers unsupported. Good support is provided through groups such as Crossroads Caring Scotland with its 49 local branches, which has not been mentioned in the debate. As a general practitioner, I found such support absolutely crucial for my patients. Tom McCabe, Robert Brown and Maureen Watt all referred to the need to support carers with respite. That is crucial to their sense of wellbeing.
The member talks about more money going to more complex cases, which we all support, but does that raise a concern that not enough preventive work is being done?
We are not capable of preventing the condition, but we can prevent its progress. Early care and support can lead to that.
A couple of additional issues are important. Several members, including Ross Finnie and Irene Oldfather, mentioned training. Good training is fundamental for staff in all settings, but it is also important for carers. If carers are trained properly, their capacity to support is even greater. We must also deal with the lack of stimulation and physical activities in care homes and wards. It is important that people can get out of their care home or ward when they are still physically fit to do so.
Time is constrained, and I appreciate that members' speeches have been cut short.
Time is not constrained; it is up, as they say. I am afraid that the member must sit down.
I thank Ian McKee for supporting our amendment and ask for members' support for both amendments as well as the motion.
I welcome the many positive contributions that have been made during this important debate. Members have shown their knowledge of the issues and their compassion for those who have dementia and the people who care for them.
It is clear that there are no easy solutions and that the improvement of services requires hard work and, to quote Tom McCabe, action. We have already begun that work in advance of the publication of a dementia strategy, the strands of which I outlined in my opening speech. We have worked with the dementia forum and others to identify and take forward work to improve services.
I have acknowledged before and acknowledge again the work that has been done by Irene Oldfather and the cross-party group on Alzheimer's. I look forward to the outcome of their work on a charter of rights for people with dementia and will be happy to discuss that work with them further in due course.
As many members have mentioned, we have in place a national HEAT target for the NHS, which is to increase the number of people with dementia who have a diagnosis and are recorded on GP registers. As many members have said, diagnosis is important as it gives access to other services, such as physical health check-ups, carer assessments, treatment and medication, where that is required. Diagnosis was not always seen as valuable; for too long, clinicians and others were reluctant to diagnose because they believed that little could be done to respond to dementia effectively.
Similarly, people themselves were reluctant to seek diagnosis because, although they could readily identify the challenges that it could bring, such as exclusion, stigma and the potential loss of freedoms such as holding a driving licence—a point to which Christine Grahame referred—they could not see the benefits. I think that the situation is changing and we have recently completed a pilot media campaign in Dundee, which was focused on raising public awareness of dementia. The outcomes of that pilot suggest that, with information and signposting, people are more likely to seek help earlier.
I will take into consideration Maureen Watt's suggestion that we produce a leaflet that is similar to the stroke leaflet that has been distributed.
As Richard Simpson pointed out, the evidence shows that seeking help earlier results in people maintaining capability and capacity for longer and it allows them to stay in their own home, in familiar surroundings, for longer. It also allows the health and care systems to work with carers to enable them to manage the process for longer and with less stress.
As many members have pointed out during the debate, information and support for people with dementia and their carers are crucial. We are still learning about the best ways to organise and deliver post-diagnostic support and information. We have commissioned three local projects, which are being led by Alzheimer Scotland and the dementia services development centre at the University of Stirling, exploring different approaches to providing interventions, support and information following first diagnosis. The projects are taking place in Renfrewshire, Shetland and Lothian and we will use them to learn how best to organise and provide post-diagnostic support.
We have also updated and published "Coping with Dementia—a practical handbook for carers" as well as "Worried about your memory?" and "Facing Dementia: how to live well with your diagnosis", and we are making those publications available throughout Scotland. Those are high-quality resources that have been produced in association with service user organisations and which I hope will help people who have had a diagnosis.
As I said in my opening speech, our work on dementia overlaps and interacts with other work, such as our work on palliative care, carers, self-directed care and shifting the balance of care and the work that we are doing collaboratively with local government on the future of care for older people. Jackson Carlaw was right to point out that that will require an honest discussion with the public about the role of the state, the family and the community in the care of older people.
Order. Too many conversations are going on.
I turn to some of the other points that have been made during the debate. Cathy Jamieson mentioned the role of Alzheimer Scotland, which is, of course, a key leading organisation in taking the strategy forward. The consultation that it undertook is forming part of the consideration that the work streams are taking forward.
Ross Finnie said that we needed to move quickly on some of the issues in "Remember, I'm still me". I reassure him that I speedily met the care commission and the Mental Welfare Commission to put in train action that will deal with some of the immediate issues, and that work is continuing.
Mary Scanlon made a number of points. The one that I want to pick up on was about GP practices being linked to care homes. We are getting better at that. The Royal College of General Practitioners is keen, and it proactively approached me to talk about how it can help to facilitate that. That work is also continuing.
Christine Grahame mentioned the chief scientist office funding of more than £1 million over the next three years to aid research into dementia. That is important on two fronts. It might help us to find a cure, and the fact that that work and research is going on also gives families hope.
I confirm to Sandra White that the older people's assembly will be able to feed its comments into the strategy.
Maureen Watt mentioned the training of paid and unpaid carers, which is indeed important. Many members mentioned the lack of mental stimulation, which is another important area. We have funded the elderflowers initiative, which is an innovative programme that goes into hospitals and other care settings to work with people with dementia. If members have not seen it in action, I suggest that they do so, because it does amazing work.
I reassure Ian McKee that the involvement of dementia service users and carers is important and they are represented in each of the five work streams.
I mentioned Woodgrove nursing home in Aberdeen, which was one of the first specialist care homes for people with dementia and is supported by the dementia development centre. I would be grateful if the minister would confirm that she is prepared to take steps to encourage the agencies that are involved in supporting and regulating that work to talk to each other so that the home is not closed due to a failure to join up the care commission standards with local government funding, which has clearly been the source of the trouble in that case.
I told Lewis Macdonald in writing that that is a matter for local resolution, which is the view that he would have taken when he was a minister with the same responsibilities that I have now. I reiterate Maureen Watt's point about the Rubislaw Park care home, which is run by crossreach and which provides excellent care. I would have thought that Lewis Macdonald would welcome that.
I am proud to have been able to open and close this afternoon's debate on a dementia strategy. I welcome the support for the work that was offered by members in all parts of the chamber. I welcome their comments and challenges, which are based on a shared commitment to seek the best for people with dementia and their carers in Scotland. Let us get on with the job in hand. I certainly look forward to working with members as we do so.