Cancer Patients (Benefit Entitlements)
The final item of business is a members' business debate on motion S2M-2294, in the name of Elaine Smith, on a better deal for people dealing with cancer. The debate will be concluded without any question being put.
Motion debated,
That the Parliament congratulates Macmillan Cancer Relief on the success of its "A Better Deal for People Dealing with Cancer" campaign which has so far directly helped 8,000 people across the UK access advice on the benefit entitlements of cancer patients; reasserts its support for the campaign and the recent round of radio promotions targeted at areas in the United Kingdom with high cancer and mortality rates and low uptake of disability benefits, including five areas of Scotland; expresses concern that Scotland has the highest non-claimant rate (64%) amongst patients with a terminal diagnosis; acknowledges that the key aim of the campaign is to secure specialist advice for every cancer patient at diagnosis; recognises that such an objective could be best realised through partnership-working between stakeholders, such as the Benefits Agency, the NHS, local authorities and cancer charities, and considers that co-operation between the Scottish Executive and the UK Government is necessary to facilitate such change.
I am delighted that this motion has been chosen for this evening's debate as it serves to highlight further Macmillan Cancer Relief's excellent campaign. It also provides an opportunity for us to discuss the role that we can play in supporting the campaign's objectives and the action that is needed to tackle the related problems. I therefore thank those members who signed the motion and those who have stayed for the debate.
My focus on the subject stems from a meeting that I attended last year with my colleague Tom Clarke MP, Maria Eagle, who is the Minister for Disabled People, and members of the Lanarkshire speakeasy club. The speakeasy club is a voluntary peer support group that works with people who have developed cancer of the larynx and undergone a laryngectomy, or removal of the voice-box, as a result. The secretary of the group, Anne Muir, is in the gallery this evening. I am delighted that she has joined us and I welcome her to the Parliament.
During that meeting, we heard first-hand accounts of the harrowing situations in which speakeasy members found themselves after they had surgery. Effectively, patients have to relearn techniques to enable breathing and communication and they can be faced with the possibility of further surgery in order to improve vocal ability. In addition to the physical and emotional upheaval, group members found that their illness introduced new and varied constraints on their finances and that accessing benefit services was far from straightforward. Obviously, the debilitating effects of a laryngectomy pose specific challenges for patients who need to access the Benefits Agency; for example, services such as telephone advice lines are no longer practical. That makes engagement more difficult.
The difficulties encountered by speakeasy members are not limited to that area. They range from problems with interpreting forms to struggling to have their condition adequately understood. Macmillan Cancer Relief has found that financial concerns are second only to physical pain as a cause of stress for people with cancer and their families. The financial implications of a cancer diagnosis can be immediate and severe. At a time when income, energy and resources start to decrease, expenses usually increase. General living costs such as housing, debt and mortgage repayments conspire with increased bills for essentials such as travel and parking, child care, heating, laundry, food and prescriptions to push many patients and their families to their financial limit at a time when they should be concentrating on their immediate health concern.
In June last year, Macmillan reported that 77 per cent of people who responded to its CancerVOICES survey had incurred extra expense as a result of their cancer. Given the fact that more than £126 million in disability benefits went unclaimed by people with a terminal cancer diagnosis in the United Kingdom last year and considering the fact that Scotland has the highest non-claimant rate—64 per cent of relevant Scottish patients did not claim the benefits to which they were entitled last year—it is apparent that we have a significant problem to address.
Much of the work on assessing the scale of the problem, identifying barriers and developing solutions has already been done. During its 2001 strategy review, Macmillan found that current trends suggest that more people will be diagnosed with cancer, more people will survive cancer for longer and more people will live at home with cancer for longer. From previous surveys, Macmillan knew that financial concerns were prevalent among cancer patients. However, its analysis of the plans of statutory and voluntary services showed that none of them had plans to address the need for practical support that the trends and surveys identified.
In recent years, Macmillan has carried out several research projects and has initiated high-profile campaigns such as the campaign for a better deal for people dealing with cancer. Central to much of its recent work are the findings of a report that was published last year on benefits access for cancer patients in Northern Ireland. The report aims to identify the relevant barriers to benefits access and makes recommendations on how improvements can be made. Its findings are comprehensive and wide reaching. Crucially, they encompass both reserved and devolved issues. Many of the recommendations in the report relate to the operations of the Benefits Agency and are, therefore, reserved. However, much of the report recommends closer working between health and social care professionals and social security agency staff to enable a greater understanding of their roles and to develop clear pathways of referral for advice for patients.
Perhaps the most significant recommendation—the one that has been echoed in the better deal campaign—is that every cancer patient should be made aware of the fact that they may be entitled to benefits at diagnosis and that specialist help and support is available. In Lanarkshire, there is a service that aims to do just that. In 2001, Macmillan Cancer Relief joined forces with the Lanarkshire citizens advice bureaux to provide a point of contact for referrals and advice for cancer patients. Project workers liaise with a range of nursing and other staff in Lanarkshire's three main hospitals to raise awareness of the service and to encourage the early referral of patients, who are then offered a range of options for guidance and support, including advice sessions and home and ward visits.
The project is now in its third year of funding from Macmillan and has achieved considerable success. In 2003, the project was successful in securing more than £500,000 in benefits for cancer patients in Lanarkshire. That figure more than doubled last year, with more than £1 million secured for the project's clients, 99 per cent of whom were new or upgraded claimants. The project exemplifies what can be achieved through partnership working and engagement between relevant stakeholders. I encourage the minister to liaise directly with Macmillan, with a view to learning from the project and, possibly, rolling variations of it out across the country.
The statistics show clearly not only that the problem exists throughout the United Kingdom but that we face a particular challenge in Scotland, making the need for decisive action on the part of all the stakeholders all the more urgent. I congratulate Macmillan Cancer Relief on the commitment and initiative that it has shown on the issue, and I encourage the Scottish Executive to engage with the charity to tackle the problems effectively. In closing, I refer to the words of a cancer patient from Luton, who summed up the situation concisely when she said:
"I really think that you should be able to talk to somebody straight away after you or your partner has been diagnosed with cancer. This way so much unnecessary worry could be avoided."
I commend Elaine Smith for lodging this very worthy motion. My colleague Stewart Maxwell, who cannot be here today, launched the Macmillan Cancer Relief campaign on benefits in the Parliament. In November, I took part in a seminar on the subject, which included a workshop on the benefits system and how many cancer patients fail to access it, as Elaine Smith has said.
Many cancer patients and carers may be entitled to claim benefits such as disability living allowance, attendance allowance, income support, carers allowance and other benefits. However, a lack of knowledge, embarrassment or the sheer difficulty of claiming may prevent them from accessing those benefits. The statistics show that 64 per cent of those with a terminal cancer diagnosis—nearly 10,000 people in Scotland—did not claim disability benefits last year. That amounts to £15 million that was unclaimed but desperately needed. There is a variety of reasons for that. Elaine Smith referred to the excellent report entitled "Benefits Access for People Affected by Cancer in Northern Ireland", which was the result of the nine-month secondment of a member of staff from Northern Ireland's Social Security Agency—social security is devolved there, which is handy—
"to investigate the barriers faced by people affected by cancer in Northern Ireland in accessing benefits."
That was the springboard for the excellent leaflets that Macmillan has issued, which are entitled "Affected by cancer? We can stop it spreading to your finances" and "Help with the cost of cancer".
The summary of the Northern Ireland report says that the diagnosis of cancer sometimes makes it difficult to claim benefits, because the impact of some cancers is variable and unpredictable—it is cyclical. On one day, people might not feel that they require to claim benefits, but on another day, they might require to claim them.
The summary also says:
"There are problems associated with people being identified as ‘terminally ill'. Being identified as ‘terminally ill', as defined in Social Security legislation, entitles an applicant to quick and easy access to certain … benefits. However, there are different understandings amongst health and social care professionals and the Social Security Agency about the definition".
A simple matter such as that can determine whether someone accesses benefits.
All the comments from individuals and the data show that fear of the debt that is incurred from all that lands on people who have cancer is next only to the illness itself as a concern and must exacerbate dealing with the illness.
The summary says that many people with cancer do not have a good understanding of how the benefits system works or how to access it. Most health and social care professionals who were interviewed for the survey had limited knowledge about the benefits system. Many knew that they needed to help their patients, but they did not know how to do that.
The report also says that
"Many key staff working for the Social Security Agency have"
little
"understanding about the impact of living with cancer"
and need specific training in how to deal with such people. It must be extremely difficult to fill in a form with the words "terminally ill" on it when it is about oneself.
The report's conclusions and recommendations say that what is needed is improved communication about an advanced disease or poor prognosis, an increase in knowledge and awareness, improved access to benefits and support in the decision-making process.
I am taken with the comments of individuals with cancer who have tried to claim benefits. A man from Huntly in Aberdeenshire says:
"I found it very hard and stressful to access benefits. My Macmillan social worker told me I was eligible and helped me fill out the forms. Even so I was rejected the first time and so I went to Appeal and won. You have to fight for everything."
Such people need support when they deal with the illness.
Macmillan Cancer Relief's chief executive, Peter Cardy, says:
"It is unacceptable that cancer patients should suffer the huge problem of debt, poverty or financial hardship at a time when they are most vulnerable—especially when help is available if only they knew about it. This is why Macmillan wants a better financial deal for people dealing with cancer and to see changes in the law so that claiming benefit is made much easier."
I assume that all of us in the chamber support that.
I very much welcome the debate. I do not know how far we have moved on. We have difficulties in Scotland because the Benefits Agency is not devolved, but that does not prevent us from making the most of devolution by ensuring liaison with the Benefits Agency and adopting the Northern Ireland model to ensure that all types of cancer patients are not disadvantaged when they need financial support.
The issue is important and Elaine Smith deserves credit for identifying it. Parts of the issue concern Westminster, so although we should agitate for changes to how the benefits system works, we cannot make those changes ourselves. However, we can try to make people understand the system better and we can advise them. That is a general point. Elaine Smith has put her finger on a fault in our society.
Life is increasingly complicated; people face more and more complex issues, whether it be putting together a flat pack from IKEA for which they need expert advice, putting together a tax return, understanding the benefits system or even understanding an Edinburgh referendum voting paper. Life is full of complexities and many people need advice at the right time. Advice at another time is either no use or much less use. We must consider how we can give advice better at key points.
There are some good projects. Elaine Smith mentioned one, and I know that in some areas citizens advice bureaux liaise well with hospitals so that they can give people advice when they are in hospital. There are also advice centres in law courts. However, none of us puts advice giving high enough in our order of priorities for it to attract support from public funds. I am as guilty of that as anyone. We think that it is better to get something tangible in return for our support, and advice giving sounds a bit vague, woolly and liberal with a small L. However, we must pay far more attention to it.
By and large, our systems, including the benefits system, were invented by well-meaning and reasonably intelligent politicians of whatever party and civil servants, but they do not take account of the people who must understand and work their way through the systems. I plead with the minister to give serious thought, and to encourage her colleagues to give serious thought, to improving provision of advice at critical times through voluntary organisations such as CABx, the health service, local authorities and others. We should devote more of our resources to that.
Does Donald Gorrie agree that the Maggie's centres are an excellent source of advice to many people who suffer from cancer, especially breast cancer, and that the creation of Maggie's centres in places such as Dundee, Glasgow and, soon, Inverness is greatly to be welcomed?
Yes. When I represented Edinburgh West, I had considerable dealings with the Maggie's centre at the Western general hospital in Edinburgh. I can testify to the very good work that it does.
We can build on the good work that many good people do. However, the Macmillan Cancer Relief briefing shows clearly that overall we are failing to deliver advice at the right moment to people who really need it. This debate is important in enabling us to focus our efforts to do that better in the future.
I thank Elaine Smith for securing this debate on a very important topic and I thank Macmillan Cancer Relief for its on-going campaign.
It is a real indictment of our society if people become poor or in debt because they have a serious and life-threatening illness. Cancer is a collection of conditions, rather than one condition. It is not a simple condition of the sort our benefits system is geared up to deal with. The effects of the illness are variable during its progression. People may be well one day, but after they have received a diagnosis they may have treatment that makes them feel worse temporarily and leaves them incapacitated and unable to work. They may get better, relapse and recover again, or they may deteriorate gradually. Deterioration can also be quite rapid.
The juggernaut that is our benefits system is not well designed to cope with cancer, which seems especially to be the case in Scotland. As has been mentioned, we have the worst claim rate in the UK for disability or attendance allowance for people who are dying of cancer. Approximately only one third of the people who should receive those benefits are receiving them. It has been estimated that about 10,000 people are not claiming disability or attendance allowance that is worth a total of £15 million. If pension credit, incapacity benefit and housing benefit for all the people who are affected by cancer are taken into account, the figure is likely to double to approximately £30 million. It will increase as the age profile of our population increases and cancer rates inevitably increase along with it. The problem that we are discussing is UK wide, but there is a particular Scottish problem of under-claiming of benefits, which we need to examine. I may say more about that later, if I have time.
I quote from a Macmillan briefing that I was grateful to receive prior to the debate. It states:
"Speaking at the close of the members' motion S2M-166 on the Macmillan CAB partnership on 9 October 2003, the then Minister, Malcolm Chisholm, said that the issue of welfare benefits should be taken forward by Macmillan through the Joint Futures Agenda."
That was to happen in co-operation with health boards and local authorities.
The briefing continues:
"A list of the local managers was provided to Ian Gibson of Macmillan to enable direct contact with decision-makers. Macmillan has made extensive contacts and it has not been a positive experience.
In general the vast majority of NHS personnel contacted do not regard welfare benefits as a health issue and/or a part of the Joint Futures Agenda."
We can understand that because it is not part of national health service personnel training, but welfare benefits fall between stools at the moment; it does not seem to be anybody's job to deal with them.
Macmillan talked about different groups with which they tried to engage. Honourable mention went to West Dunbartonshire Council, which is entering a partnership with Macmillan. The other honourable mention was of the Pension Service, which has offered to work in partnership with Citizens Advice Scotland and with Macmillan. That initiative is being piloted in Aberdeen. It is an indictment that none of the bodies that are responsible to the Scottish Executive shows that degree of co-operation and I know that it has been a disappointment to the people at Macmillan who had hoped to develop such work.
There needs to be directive action from the Executive. A directive needs to be given to councils and health boards on the joint futures agenda to the effect that welfare benefits must be part of the agenda and that they should seek partnership with the voluntary sector. The Executive should require reports from health boards on what action they are taking to make welfare benefit support more accessible to patients and it should make representations to Westminster about what analysis it is doing and why Scotland has the worst claim rate in the United Kingdom. We should not just roll over and say that it is a fact of life; we should ask why it is happening, not just among cancer patients, but generally. That money could tackle poverty in Scotland, but it is not coming here. The matter should be addressed with some urgency.
The way we treat our seriously ill people, and in some cases our terminally ill people, is important. It is a measure of the kind of society we have. If we let those people down and let them fall into poverty and debt for no reason other than that they have developed a serious illness—such as could strike any of us tomorrow—that is a real failing in society and it must be tackled.
I commend the motion and I agree with everything in it. I commend the Macmillan campaign and I urge the Executive to do everything that it can to engage with the campaign and develop it further.
I congratulate Elaine Smith on securing this timely debate. During Karen Whitefield's members' business debate on the Lanarkshire initiative between the CABx and Macmillan, I remember being extremely impressed by the clear and obvious benefit to ill patients of receiving welfare benefit advice and other financial information early in their illness. Such a service would benefit any sick patient, but it is particularly valuable for people who are diagnosed with cancer, who are hit with more than the physical and emotional bombshell that the big C always generates. They are also hit with loss of earnings; frequent travel costs for hospital visits; the cost of wigs and necessary clothing to cope with hair and weight loss; added food costs; extra heating costs, because they are confined to the house more than usual; and various other added costs. The stress of wondering how to cope with all those added financial pressures, when people are often totally ignorant of the benefits and help available, does recovery and prognosis no good at all. To have those worries lifted by an initiative such as the Macmillan better deal must be like a gift from heaven to those people.
When the former Minister for Health and Community Care suggested in 2003 that Macmillan should progress the issue of welfare benefits through the joint futures agenda, it looked hopeful that initiatives to help patients living with cancer would soon be rolled out throughout the country. Sadly, as Eleanor Scott mentioned, that has not happened. The management of welfare benefits is a mishmash in councils throughout the country. Sometimes it is dealt with by social work and sometimes by trading standards or the chief executive's department. In my city of Aberdeen, it is split between social work and housing. Joint futures representatives often have nothing to do with welfare benefits. How can a voluntary organisation such as Macmillan possibly operate nationally through joint futures if its representatives do not even know about the issue? It is small wonder that little progress has been made since 2003.
However, I was pleased to learn recently that Aberdeen is piloting a partnership between the Pension Service, Macmillan and Citizens Advice Scotland, with the citizens advice bureau acting as the hub and the pension service giving much of the advice and help to the over-60s in the city. It is not fair that patients and carers who shoulder the burden of cancer should depend on a postcode lottery for financial advice and help. If the proposed new service in my area gets off the ground later this year, I hope that other parts of Scotland that currently have no scheme for helping patients to deal with cancer will soon follow suit. For that to happen, the Executive and the Westminster Government will clearly need to facilitate matters in the way that the motion suggests. Co-operation and discussion with Macmillan would be a good way forward.
I warmly congratulate Macmillan on uncovering the huge unmet need of such vulnerable patients through its better deal campaign. I also congratulate Elaine Smith on ensuring that the issue is aired in Parliament. I very much look forward to the minister's response.
I join other members in congratulating Elaine Smith on securing tonight's debate and I join her in welcoming members from the speakeasy club.
The Scottish Executive recognises the considerable additional anxieties and difficulties that are faced by people with serious illnesses such as cancer. We recognise that it is vital that people are able to access the information that they need at a time and in a format that best suit them. Whether the information is about their individual treatment or day-to-day support, such as advice on the additional state benefits to which they might be entitled, it is clear that such needs must be met alongside and integrated with their clinical care. Elaine Smith spoke very movingly about how, during what is undoubtedly a stressful and confusing time in their lives, patients welcome support such as that which is offered by Macmillan Cancer Relief.
I congratulate Macmillan Cancer Relief on the success of its better deal campaign. Backed up by radio advertising, the recent campaign was aimed at raising awareness of the advice that is available and has helped about 8,000 people across the United Kingdom.
The Scottish Executive shares the ideals of the Macmillan campaign. We, too, want people to access the benefits to which they are entitled, regardless of their background and where they live in Scotland. We are striving to reach those most in need by working across health, education and social care to address the opportunity gap in Scotland. We are also working to improve cancer outcomes. More and more people are living after cancer, with a 13.6 per cent reduction over the past eight years in the number of deaths from cancer in people under 75.
We recognise that the issues will be addressed only if people work together. An example of such collaboration, which involved Macmillan, was recognised by the Parliament in a members' business debate in 2003. As Elaine Smith has explained, Macmillan's partnership with citizens advice bureaux in Lanarkshire has provided debt and benefits advice to cancer patients.
Citizens Advice Scotland provides advice in more than 200 locations, including general practitioner surgeries, hospitals and clinics, and on home visits. Across the country, other similar advice programmes that are under way are funded by bodies such as the Big Lottery Fund, Sargent Cancer Care for Children and Maggie's cancer care centres. The importance of the Maggie's centres was highlighted by Fergus Ewing earlier.
Fully accepting the constrictions of devolution, does the minister agree that the Northern Ireland model provides an excellent way forward? Can the Executive involve the Benefits Agency in the same way as happens in Northern Ireland, where uptake of benefits has been much better? We need that kind of full-frontal approach. Initiatives with citizens advice bureaux and so on are all very well, but the Benefits Agency is where the great problem lies.
Our minds are not closed to any suggestion. If the Northern Ireland model has demonstrably worked effectively, we will be happy to look at it.
People in Scotland can also obtain advice from Money Advice Scotland, the national debtline, which is a telephone advice line, and the Department for Work and Pensions benefit inquiry line. DWP support and advice is delivered to people of working age, employers, pensioners, families, children and disabled people through a UK-wide modern network of services.
As part of the Executive's cancer strategy, "A Guide to securing access to information" was prepared by a group of patients, carers and voluntary sector representatives—the group was chaired by Macmillan's director for Scotland. The guide aimed to improve the co-ordination and availability of patient and carer information and exhorts all concerned to work together for the benefit of patients, their families and carers.
Cancer networks aim to integrate health and social care, which is essential if they are to meet the holistic needs of people who suffer from illness and to address the effects that illness—whether cancer or any other disease—has on their everyday lives.
Each of the three regional cancer networks continues to develop information packages in ways that are best suited to patients and to promote awareness of all the information needs across the patient pathway for people who are affected by cancer. That includes access to clinical, practical and psychological information as well as the provision of information about access points for benefits, transport, work, housing and debt advice.
In the west of Scotland cancer network area, individual information packs are provided for patients. They can select the detailed information that they want so that they have at their fingertips a reliable and constant guide that is best suited to their needs and includes information about work, benefits advice and contact details. I am keen to look at examples of good practice, such as the work of the west of Scotland cancer network. We must consider what works most effectively.
Looking to the future, the emerging community health partnerships are key building blocks for the modernisation of NHS Scotland and joint services. CHPs will have a crucial role in developing effective partnerships, in integration and in service design.
It is particularly important that we look at the work that has been done on joint futures, which will be integrated with the plans of the CHPs. I am interested to hear what has been said today—and what was said in the 2003 debate—about joint futures. I would be interested to hear more details about such work from Macmillan and to look to ways to deliver a more joined-up service in the future.
As members will know, CHPs aim to provide a focus for integration between primary care and specialist services and integration with social care. They aim to work in partnership with local authorities, the voluntary sector and others to support the improvement of the health of local communities. CHPs will be the focus for joined-up work in the future.
There is ample evidence that by working collaboratively and in partnership Government, local authorities, health and social services and the voluntary sector can secure real improvements in services for people with cancer.
I will briefly respond to some of the points that have been made in the debate. Elaine Smith asked me to liaise with Macmillan—I am happy to undertake to do that. If representatives from Macmillan would like to meet me, I would be happy to meet them to hear at first hand their views on what works and what we could do to improve services for people with cancer. I recognise the financial difficulties that many people find themselves in and we should look at ways to ensure that such difficulties do not arise.
Fergus Ewing mentioned the Maggie's centres. A network such as that is hugely important in giving people information at the time of diagnosis. This morning, I attended an event in a library in Glasgow where people with mental health problems can access books that are prescribed for them by GPs. We should continue to consider such ideas. We are using networks in the community through which people not only are empowered to find out information for themselves but can be supported; perhaps there could be partnerships between CABx and libraries. We must consider creative ways of making progress, but it is critical that we ensure that people have access to information at the time of diagnosis. I fully support what members say about the importance of speed of access to information and support.
I pay tribute to everyone involved in developing cancer services. I congratulate Elaine Smith on securing the debate and Macmillan Cancer Relief on the launch of its better deal campaign.
Meeting closed at 17:40.