Plenary, 26 Jun 2003

Meeting date: Thursday, June 26, 2003

Official Report 618KB pdf

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Carers

The final item of business is a members' business debate on motion S2M-110, in the name of Irene Oldfather, on valuing carers.

Motion debated,

That the Parliament recognises the hard work and dedication of Scotland's 115,675 unpaid carers, a workforce comparable to the total NHS workforce in Scotland; acknowledges the role of Scotland's carer population as partners in the provision of care; recognises the measures outlined in Partnership for Care: Scotland's Health White Paper and in the Community Care and Health (Scotland) Act 2002 to increase partnership working across the health and social care services; notes that the health and well-being of many carers are affected as a direct consequence of the physical and emotional strains of caring; welcomes the dedication of care assistants across Scotland in providing vital respite services to carers and their families; congratulates the UK-wide network of 30,000 Princess Royal Trust for Carers centres on the level of support that they provide to carers and their families; recognises that there are many more unidentified carers in Scotland and that, for appropriate support to be administered, these carers must be identified; further welcomes the publication of Focus on Carers and the NHS - identifying and supporting hidden carers - Good Practice Guide by the Princess Royal Trust for Carers and the strategies for identifying carers contained therein, and considers that the Scottish Executive should target resources specifically on identifying and supporting carers in order that the vision underpinning recent legislation can be realised.

I thank all the members who signed the motion and those colleagues who have stayed behind in this final meeting of Parliament before the summer recess. The motion has attracted a great deal of support from across the political spectrum and it is fitting that the final word before the recess should be on the needs of carers.

When we set up the Parliament, we wanted it to change the lives of ordinary people. Much has been achieved in the past four years. In 1999, a carers strategy was published that identified priority areas for action, which included the introduction of legislation to allow carers' needs to be met; the promotion of new and flexible services including respite services; giving attention specifically to young carers; and the provision of better and more targeted information. No one can doubt that we have come a long way.

Six hundred thousand people in Scotland have caring responsibilities—some of them are in the chamber tonight—and around 116,000 people in Scotland care for someone on an unpaid basis for more than 50 hours a week. Those are the people whom we know about, but there are probably more who do not register in the statistics.

I will share with colleagues the story of Mary, who was the first ever constituent to come to one of my constituency surgeries. When she came in, she sat down and began to weep uncontrollably. She was an 84-year-old carer who was looking after her 45-year-old terminally ill son, who had Huntington's chorea. The week before, she had collapsed in the street with exhaustion and had been taken to hospital by ambulance. She discharged herself because she saw herself not as a carer, but as a mother—to her mind, looking after her son was her responsibility and there was no one else to do it.

Taking the first step to ask for help was very hard for Mary, but once she finally did it, she did not look back. We immediately arranged for Mary to receive help from day care respite services and help in the home—help to get her son ready for bed and to get him up in the mornings. A few weeks later, she came back to my surgery smiling. Regrettably, she died a year later: as with many carers, her own health suffered. However, she was supported in that last year of her life and respite care enabled her to keep her son at home for an extra year, which is what she wanted.

Respite care is a lifeline for carers, as it can provide an anchor to sanity and rest in what is too often the turmoil, pressure and stress of caring for a loved one. I guess that there are many official definitions of what a carer is, but I believe that a carer can be summarised as someone who puts their own life—or at least part of their life—on hold to allow someone else to live to the best of their ability.

From the perspective of a carer, respite services are a bit like a fairy godmother. Too often, however, respite care is seen as the Cinderella of the social services and it can be the first area to suffer. We are rightly proud of the home help service, but in local authorities in which the staff are multifunctional and provide both home help and respite care, the respite care service is often the first to suffer. Also, despite the efforts that are made, the simple truth is that not enough respite care is available. If there is one service that could allow families to cope for just a little bit longer—to prevent admissions to residential care and to help keep people in their homes—it is the respite care service. We must ensure that the money that is being invested in it translates into additional help and support for carers.

There is a group of carers who have for too long lived in the shadows: young carers. Too often, those young people take on heavy burdens of responsibility far beyond their years. Only a few years ago, it was not cool for a young person to tell anybody that they were a carer. Now, with support groups emerging throughout Scotland, young carers can share their thoughts and problems with other young people. In my constituency, there is a group of extraordinary young people who undertake daily caring tasks for brothers, sisters, mums, dads, grannies and grandpas. It is a humbling experience to talk with them and to listen to them. We must bring them out from the shadows and into the light; we must let them know how proud of them society is.

It would be remiss of me not to pay tribute to the professionals in social and health services and the care assistants throughout Scotland who, day in, day out, carry out their jobs of supporting carers not for financial remuneration—although they are paid for it—but out of dedication. Organisations such as the Princess Royal Trust for Carers, the Scottish Carers Alliance, Alzheimer Scotland and the Multiple Sclerosis Society provide much-needed information and support to people who choose to sacrifice and put the needs of others first.

Today, we have a Parliament and an Executive that will speak up for carers. As a society, we all have a responsibility to support the most vulnerable in our communities and we owe our great unsung heroes and heroines a debt. Supporting carers is not an optional extra: it should be an integral part of service delivery.

I commend the motion to the chamber and look forward to hearing the views of colleagues.

I congratulate Irene Oldfather on securing the debate and on highlighting the fact that around 116,000 people in Scotland are unpaid carers—a fact of which many people, including me, were unaware. I salute the many people who take up the role. Having spoken to folk, I know that they do not want congratulations. Sometimes, they do not even want thanks. What they want is recognition, and information that will make the role of carer less of a chore and more enjoyable.

We all know that most carers regard themselves not as carers, but as wives, husbands, partners or children. As such, they are not always in receipt of benefits, which is something that we must remember and take on board. Carers who do not receive benefits are not acknowledged by agencies that help carers. Such carers can be described as hidden carers and there are many of them throughout Scotland.

I congratulate the Executive on its carers strategy and particularly welcome the assessment of carers by local authorities. However, that assessment might not always reach the hidden carers. Various agencies have done work around the issue of carers. Irene Oldfather referred in particular to the Princess Royal Trust for Carers, which has done a great deal of such work, including a survey that covered pharmacies, hospitals and doctors' surgeries, and speaking to people in the street. The survey threw up interesting and, occasionally, sad facts.

The survey showed that many carers do not get relevant information and are not reached by local authorities or hospitals. The help that they should receive is not always present. The survey also found that two in 10 carers had not been directed to any sources of information whatsoever. They did not know what was available to them. We should all take that fact on board.

I ask the minister to consider an information strategy for carers, particularly for the hidden carers. Some carers receive benefit. For example, the elderly woman Irene Oldfather mentioned used to be a hidden carer but then received help. If she had had information about where to go for help, she might not have had to suffer as she did for so long.

I ask the Executive to take on board the issues that were raised in the Princess Royal Trust for Carers strategy document. I hope that we will help hidden carers more and give them the information that they so desperately need and deserve.

I am grateful to my ex-colleague on the Health and Community Care Committee, Irene Oldfather, for raising the issue of carers. She mentioned a lady whose son had Huntington's chorea. Before I received information recently about a similar case, I had not appreciated how difficult it is for carers when the cared-for person does want strangers coming into the house. If there is one thing that I have learned in the past four years, it is that such things put tremendous pressure on carers, because they feel that they are letting down the cared-for person.

I attended a carers' conference in the Highlands last week and was shocked to discover that there are 18,500 carers in the Highlands. I suppose my image of a carer is of an 84-year-old woman who is at home all day. What I had not appreciated is that 11,000 of the carers in the Highlands are in employment. We often forget that carers can also have jobs. We should look at that situation more widely than the carers strategy does. We should also try to achieve more tolerance, understanding and flexibility from employers for carers. If a carer has been up all night caring for someone, it is not always possible for them to make it to work. Highland Council gave a presentation that showed that, where possible, it is adapting its strategies and work practices. I commend the council for that initiative.

When I knew that I was to speak in the debate, I decided that the most important aspect of it would be respite care. Throughout the four years of the previous session, we ensured that carers and their needs were high on the agenda. We acknowledge that the Executive has an excellent carers strategy. However, as members will know, it is not strategies, initiatives or glossy documents that count, but implementation.

The most moving oral evidence that we heard in the Health and Community Care Committee—I think that my ex-colleagues will agree—was from Isobel Allan, who is a carer. If there had been a star prize for submitting evidence to a committee, it would have gone to her.

Regardless of the commitment across parties in the chamber, and regardless of the good work that we do and the bills and initiatives that we sign up to, we cannot assume that someone out there has the same commitment as we have.

I want to continue to monitor the implementation of the Mental Health (Care and Treatment) (Scotland) Act 2003 and of free personal care. Highland Council has already tried to adopt its own eligibility criteria for free personal care. We should not be so naive as to think that because we pass legislation in the Parliament and a glossy brochure is published, things will happen magically at the chalk face—they do not.

The second issue that I want to raise was mentioned by the Deputy Minister for Health and Community Care in response to a question from Wendy Alexander about the disabled. I refer to direct payments. Many carers do not know that direct payments exist. Many councils do not particularly want them to know, because direct payments give carers the power, freedom and choice to buy in appropriate services that they know are best for the cared-for person. Many councils regard direct payments as a threat to their monopoly provision of services.

Like others, I endorse the excellent work of the Princess Royal Trust for Carers. However, I could find no mention of direct payments in the documents that I examined today. When I was at a multiple sclerosis seminar last year, I mentioned the help that was being provided to carers through direct payments. No one had heard of them. We must all do more to give carers the autonomy to buy in proper health care.

My final point arises from a case that was brought to one of my surgeries in Inverness last week. It concerns mental health problems combined with drug and alcohol addiction. In the case to which I refer, the parents of a 29-year-old woman were not allowed to be told whether she turned up for appointments and did not know what medication she was receiving. They were told that their daughter had a mental illness, but they did not know whether she attended the day centre. They wanted to help their daughter and to be given advice, rather than have to step on eggshells. This was a very sad case; eventually, the daughter became so violent that the police had to remove her from the house. Her parents wanted to help, but information was withheld from them and they were excluded from contributing to their daughter's health.

I congratulate Irene Oldfather on securing this debate and am pleased to have had another opportunity to talk about carers.

We have heard three excellent speeches from members who have real experience of this subject, know what they are talking about and care about it. I want to underline a few of the points that they have made.

Carers are probably the most humbling people whom a politician meets. In politics and other activities, one's faith in human nature is often dashed. Collectively or individually, people can behave in an extraordinarily bad way. However, the amount of unsung, unrecognised and unselfish work that carers do is astonishing. Some families remind one of the book of Job—they have problems with parents, spouses, children, housing and everything else, but they deal with it all admirably. For that reason, it is salutary for us to discuss this issue.

Carers cover the whole age range. Since their problems were brought to my attention, I, like Irene Oldfather, have been a great enthusiast for young carers. The system does not recognise them adequately. Often, schools do not know why a child is absent or that they go to sleep in class because they have been looking after a relative all night. Carers also include very elderly people looking after their spouse, whose condition is worse than theirs.

Carers provide an amazing glue that holds our society together. We must invest more in them. We are all good at making speeches favourable to carers or other worthy groups, but we are not so good at providing money and delivering it in an intelligent way. We have to have well-identified investment.

First, we have to consider carers' identification. A lot of carers do not realise that they are carers. They are like the man in a Moliere play who suddenly realised that he had been speaking prose all his life and was absolutely astonished and delighted to discover it. Carers just accept caring as a family obligation; the idea that they are carers does not occur to them. We have to persuade them that they are carers and that it is our duty to help them to care better.

Information about what help is available is key. The whole benefits structure is created by intelligent bureaucrats who assume that everyone else reads the small print and knows about everything when in fact they do not. The systems are far too complicated and nobody knows about them, so they do not benefit. We have to identify the carers and then point them towards the facilities and support that are available.

Respite care is critical and needs specific investment. Perhaps some local authorities take carers for granted because they do not sing their own song loudly enough. Some people involved in trying to help carers do not take them seriously enough. That is why organisations such as the Princess Royal Trust for Carers are important. In our form of democracy, people get results by pushing their case collectively. The carers have a good case individually. They are excellent people who get on with the job and do not trumpet their problems enough. Organisations such as the trust are important in keeping us aware of problems so that we can respond to them.

I am grateful to Irene Oldfather for securing the debate and allowing us all to make our contribution to the on-going debate about carers. Irene and I are both from North Ayrshire, so we know that an awful lot of people there, such as health-care professionals and social workers, put an awful lot of work into supporting carers

Other members have said that carers do not recognise themselves as carers, but see themselves as doing the natural thing. They are looking after someone they love, despite the fact that that means a 100 per cent commitment and giving up their own lives, simply because they want to. That is the role that carers play, even though they do not see themselves as carers.

We all acknowledge that circumstances have improved in recent years, in no small part because of the work of the Scottish Parliament. I am aware of the work that the Health and Community Care Committee did in the first session on setting up an investigation into community care. My good friend and previous employer, Kay Ullrich, played a substantial part in that and she will be pleased to see some of the changes that were brought about by the Community Care and Health (Scotland) Act 2002. Those changes have improved the lives of many carers. Carers now have more rights and more recognition, for which I am sure they are grateful.

Everything is relative. Given the low starting point, perhaps the new reality of caring in Scotland is not quite as good as it seems when we see how the legislation translates into helping people who care for those with ill health.

Most of us accept that unless someone is involved in the caring services or the health service, they do not think about someone they love developing a degenerative illness. It is something they put to the back of their mind until it happens and they are confronted with the stark reality that the person they love is ill and will not get better and that they will have to care for them. But when it happens and people have to take on that role, they do it.

It is a natural human reaction for people to start caring 100 per cent for the person in their family or their friend who has become ill. It is when that happens that we discover the vital role that carers play and how important it is to start supporting carers.

I ask the minister to address a particular issue in his summing-up speech, because there is a point where the system breaks down. Mary Scanlon alluded to it when she said that people do not want what they perceive to be strangers in their home. It is difficult to persuade some people that they have to accept help. They say that in the future they will reach the point when they know that they need help, but they do not realise that that point has already arrived. Perhaps the minister can help me by outlining how we get round that block and get people to accept the help that exists.

I know of one such case. It is heartbreaking to see a family watch their elderly mother, who herself is ill, make herself very ill by caring for their father and not looking after her own physical well-being to the point at which the family fear that the mother will, as they put it, "go" before the father, because she has given up her life. How do we get round that block? I know that it is a difficult issue, but I would be grateful if the minister could address that point.

I apologise for not being in the chamber at the start of the debate, but I did not get the message about proceedings being ahead of schedule. My comments will be brief, because the comprehensive wording of the motion covers most of what anyone might want to say about valuing carers.

I note that in the motion Irene Oldfather gives a figure of 115,675 carers in Scotland, while "The Carers' Manifesto" estimates that there are 667,000 carers.

The figure of almost 116,000 refers to unpaid carers who undertake more than 50 hours a week of work, which is comparable to a job in the health service. There are more than 600,000 carers in Scotland who might care for 10 or 15 hours a week but not as a full-time profession, as it were.

I thank the member for that clarification. I was going to seek an explanation. I wondered whether the different figures reflected the lack of accurate knowledge about carers, but perhaps that is not the case.

Whatever the true figure is, there is certainly a large and growing body of carers in Scotland and their number will increase with time as the population gets older. Around a third of carers are over 60 years old, 19,000 are young, the majority are female and 91 per cent of them believe that their caring role adversely affects their health. There are all sorts of issues about lack of support, lack of information, lack of carers assessments and lack of access to respite, which is a particular concern. A way must be found to identify the number of carers in Scotland. "Focus on Carers and the NHS" by the Princess Royal Trust for Carers contains strategies for identifying and supporting hidden carers and must be welcomed.

My understanding is that, in England, general practitioners are asked to identify the carers on their practice list, but that does not happen routinely in Scotland. I am sure that in these days of technology it would not be too difficult for us to do that without putting an undue bureaucratic burden on already overstretched GPs. A GP register of carers would go a long way towards giving us more accurate information about the number of carers.

Once the carer population is identified, it should be much easier for local support groups to be set up throughout the country to help to address carers' needs. Their work has been inadequately recognised and has gone largely unappreciated for too long.

I thoroughly endorse the congratulations that are given in the motion to the Princess Royal Trust for Carers centres, because they give invaluable support to carers and their families and raise awareness of the largely hidden body of essential support to the many groups of people who are in need of care. They certainly deserve all the help we can give them.

It was not my intention to speak in the debate, but it has been a privilege to listen to the compassion that has come from members on all sides of the chamber. I congratulate Irene Oldfather on securing the debate.

I will give members one little illustration, and will not take up my full time to do so. Mary contacted me recently. She was due to leave school when her mother took ill. She nursed her mother for 25 years, and then her mother died. She went out to work, but then her father took ill. She nursed him for 20 years. Then, as she reached 60 years of age, her father died. She applied for a pension, and the Government gave her one of 9p per week. She had not bought a stamp in her whole life and she did not realise that there was a facility whereby she, as a carer, could get some recognition for what she had been doing. If she had realised that, she would have been awarded a bit more of a pension.

We have to ensure that people are educated, so that they know that they should be entitled to more. Mary got only 9p a week because her father had left her £19,000. She was told to come back when she had only £8,000, and she would be put on to the minimum income guarantee of £102 a week. What way is that to thank a carer? Earlier today I was talking about means testing. That was the result of means testing for that individual. It is a very unfair case, but such cases exist. Perhaps we can do something to improve the situation.

I thank Irene Oldfather and congratulate her on securing this debate. There has been a great deal of positive discussion on this issue, both here this evening and at various other forums over the past few weeks. That is a clear demonstration of the importance that we all place on supporting carers.

The debate is timely. Just a couple of weeks ago, I was delighted to lend my support to national carers week. It gave me an opportunity to recognise the immense contribution that is made by carers and to give carers my assurance that supporting them remains high on the Executive's agenda.

Our recent debate on care homes highlighted the huge challenges that we face as we seek to ensure dignity and quality of life for our older people, and to do so in a climate of demographic change and an ever-increasing shift towards care at home. Delivering a better deal for Scotland's carers has to be a central part of the Executive's social care policies.

I firmly believe that we have already made great progress. Enormous achievements have been secured for—and by—carers over the past four years. The main catalyst behind that, as Irene Oldfather correctly identified, has been the carers strategy, which was launched in 1999. One of the strategy's key achievements has been the introduction of significant new laws to give carers independent access to help and support. The legislation is based on the principle that carers must be treated as key partners in the provision of care, and it includes provisions that should ensure that carers are made aware of their rights, a point that has quite rightly been emphasised by Donald Gorrie and Sandra White this evening.

To be aware of their rights, people need first to be aware that they are a carer. The motion asks

"that the Scottish Executive should target resources"

to identify so-called hidden carers, or people who are not accessing social services and who may not recognise themselves as carers. Sandra White rightly raised that issue. I am happy to say that a new publicity and information programme is on-going, and that we have placed requirements on local authorities to identify carers and to ensure that carers are supplied with all the necessary information about their rights and about the services that they can access.

As some members have already done, I should mention the excellent work that has been carried out between the Executive and the Princess Royal Trust for Carers. That has already helped identify more than 10,000 hidden carers. That is an excellent piece of work, which I endorse and encourage, both now and for the future.

As I said, the legislation places new responsibilities on local authorities to identify carers and to inform them of their rights. Mary Scanlon spoke—quite properly—about direct payments, an issue that was referred to earlier today during question time. I cannot stress too strongly that we will encourage local authorities to keep to their obligations to ensure that people are aware of direct payments and aware that they now have a far greater choice. The scheme will be extended over the coming year. I assure Mary—and the entire chamber—that we are firmly committed to ensuring that the full impact of that development is felt by carers.

Campbell Martin spoke about the requirement to monitor carers and to ensure that people are aware that they are carers, that they have rights as carers, and that there are entitlements that they should take up. Over the months to come, we will do all that we can to ensure that local authorities pick up on that agenda, actively pursue people who are involved in care, and—in as sympathetic, as caring and as professional a manner as possible—do all that they can to ensure that people access the services to which they are entitled.

We are very much aware that caring can creep up on people as a gradual change in an existing relationship. We know that the caring population is constantly changing, and we know that there are issues over whether all carers want to be identified or offered support. That is why statutory agencies such as local authorities face significant challenges in consistently identifying carers and offering them support. We will continue to encourage them to do so and will continue to monitor the success of our encouragement.

Many carers can be picked up through early contact with primary care services—by their general practitioner in particular. Carers are far more likely to see their GP than to see a social worker. That is why we made sure that the new contract for GPs established identifying carers as an indicator of good quality practice for GPs. We are delighted that the GP profession overwhelmingly endorsed the new contract last week. Let us not underestimate the scale of that achievement. It should bring significant benefits to carers.

We are currently funding work to provide information to carers through community pharmacists. To help raise awareness and to advertise sources of support, the Executive has just distributed—as I mentioned earlier—new publicity material throughout Scotland. That is the second such campaign since the carers strategy was launched.

Today's motion asks the Executive to provide resources so that the vision underpinning the recent legislation on carers—that of carers as partners—can be realised. We are doing just that. Resources available to local authorities to support carers and provide respite care have risen from £5 million a year in 1999 to £21 million this year. By any standards, that is a huge increase in real terms. Some local authorities have used that investment to reinforce their support for carers. For instance, here in Edinburgh, resources have been targeted at supporting young carers and carers from minority ethnic groups. However, we also have to recognise candidly that some local authorities have been more effective than others in using their resources and supporting carers. I am clear that we need to improve our ability to identify and measure the outcomes for carers that are being delivered through those resources and our policies. I assure the chamber—and I especially assure carers throughout Scotland—that that work will be a high priority for the Executive in the months ahead.

I know that time is short and that my time is nearly up. I do not want to give the chamber, or carers in Scotland, the impression that we are saying that we have done enough. We have not. Clearly, there is more to do. I am looking forward to meeting carers' representatives next month to discuss their and our priorities for the next three to four years. If we can establish realistic aims and aspirations, I am confident that we can make progress in our work to assist carers and make their quality of life better—and make the quality of life of the people whom they care for better too.

I acknowledge the point that Nanette Milne made and I have no doubt that some of the excellent points that have been made tonight will feature in our discussions with carers' representatives. I am sure that we will be able to establish the very important agenda for the next three to four years.

I hope that colleagues will agree that there is much to be positive about and that the carers strategy is stimulating real changes for the better. I warmly welcome today's debate. It is vital that the Parliament keeps carers high on its agenda. I am sure that the Executive can count on the continued support of the Parliament as we seek to deliver a better Scotland for carers. I assure the chamber that we welcome the continued scrutiny of our work to improve the quality of life for carers throughout Scotland.

Meeting closed at 17:25.