MND Scotland Welfare Reform Campaign
The final item of business today is a members’ business debate on motion S4M-06308, in the name of Christina McKelvie, on MND Scotland’s welfare reform campaign. The debate will be concluded without any question being put.
Motion debated,
That the Parliament notes the commitment to quality palliative care in Scotland; acknowledges MND Scotland’s welfare reform campaign, which highlights that, as people with Motor Neurone Disease (MND) have an average life expectancy from diagnosis of just 14 months, welfare reform is causing undue hardship and stress as well as wasting taxpayers’ money; believes that it is unreasonable for a 55-year-old man who has MND, lives in the west of Scotland and has had his home adapted for his specific needs to have to pay the so-called bedroom tax or be forced to move home, and commends MND Scotland’s dedicated welfare and benefits service, which provides what it considers invaluable support to people with MND at this very difficult time.
17:03
I take this opportunity to thank all the members who signed the motion. It is on an important topic, and I am grateful to the members across the parties who enabled the debate to happen.
I give my heartfelt thanks to MND Scotland, especially Susan Webster, Craig Stockton and Bryan Carroll, who I think are in the public gallery today. I thank them and the whole team for the advice, guidance and support that they have given not just to members of the Scottish Parliament but to the people for whom they care. I must also quickly thank Hanna McCulloch at Capability Scotland for the informative briefing that she sent members last night.
Members tend to open members’ business debates by saying, “I am delighted to open this debate”, but I am heart sorry to open this debate. I am heart sorry that we have to have this debate; I am heart sorry for the people who have to live with motor neurone disease; and I am heart sorry for the families who must come to terms with such a shocking diagnosis.
Members no doubt understand why I am standing here today. I was one of those family members: I had to come to terms with my dad being diagnosed with MND; I was that child who grew up with their dad progressively losing all his motor capability. My mum had three children at home and worked part-time at night so that we could look after him when we were home from school; she went out to work to make ends meet when my dad had to give up his job. I remember both my parents facing the indignity of four bus journeys to get assessed on whether he was bad enough to get sickness allowance. That was four bus journeys for a man who could barely walk and who, by that time, had no power in his arms at all.
That was nearly 30 years ago. It is tragic that, 30 years on, people with MND and their families are facing such indignity again.
A diagnosis of motor neurone disease is a devastating blow for a family. The last thing they expect is to be put through the mill of Department for Work and Pensions welfare benefits assessments, questionnaires, appeals and the worry that they will not be able to support their families financially through a traumatic time.
Can you imagine the roller coaster of emotions that a family will go through at such a testing time? Unfortunately, as a result of insidious welfare reform, that is exactly what is happening to many people with MND and their families.
MND Scotland is campaigning to highlight the dreadful impact of current and proposed welfare reform on people with the condition. MND Scotland’s energy should be spent supporting those families, but it has had no option but to join the increasingly loud calls for this horrible policy to be dropped.
MND Scotland has published a report called “Time to benefit people with MND”. I emailed the link to all members yesterday and I know that MND Scotland has sent it out, too. MND Scotland wants a few things to happen that will make life easier for people with MND at a stage of their life when life cannot get any harder.
First, people with MND should be exempt from the work capability assessment and allocated to the employment and support allowance support group. The charity points out that 100 per cent of people with MND who have been supported by the team at MND Scotland are allocated to that support group. It is a waste of taxpayers’ money to put those people through the highly stressful process of assessment.
Secondly, people with MND who are unable to share a bedroom because they need an array of equipment to keep them safe at night, or whose home has been significantly adapted for their needs, should never be subjected to the bedroom tax nor forced to move from that adapted home.
Thirdly, people with MND who are currently on higher rates for the mobility and care components of disability living allowance should not be forced to go through reassessment for the personal independence payment, which has only come in this week. It is medically impossible for their illness to improve; they should not be put through those assessments.
MND Scotland has sent its report, “Time to benefit people with MND” to MPs and MSPs, including Iain Duncan Smith; Lord Freud, the Minister for Welfare Reform; the Westminster all-party parliamentary group for MND; and the Scottish Parliament’s Welfare Reform Committee. I urge all of those people to take the time to read and act on the very small asks that I have just outlined and which that report details.
Let us look at some of the real people who are affected. We talk about new policies and sometimes do not realise that they affect real people. For instance, under the old system of incapacity benefit, people with MND were exempt from going through a medical assessment and were awarded the full benefit from the outset. That exemption was removed when incapacity benefit was replaced by employment and support allowance in 2008.
Jamie is one of the case studies on the MND website. He is 40 years old, he has MND, and he lives in the north of Scotland with his wife and three-year-old daughter. Jamie was employed as a mechanical technician but had to give up work when his motor function deteriorated and his arms became very weak. That is a picture that I can see very clearly in my mind; it is what happened to my dad. Jamie was assessed for employment and support allowance but he failed the work capability assessment. He was only awarded nine points and was deemed fit to work: how outrageous. He appealed the decision but had to wait one year for his appeal to be heard and was only provided with the basic rate of benefit during that time. From their diagnosis to their untimely death, people with MND live an average of 14 months.
Jamie eventually won his appeal at tribunal and was awarded a further 22 points. However, he was put into the work-related activity group, which means that his entitlement to ESA ran out after one year. Yes, we can guess what happened: DWP backdated his money for a year and then took it off him.
I turn to the bedroom tax. As people with MND lose their ability to walk, speak, feed themselves or breathe unaided, they come to rely on a wide variety of equipment to assist them in their daily living. Much of that equipment, such as an electric wheelchair, a special medical bed, hoists, breathing equipment and speaking aids, is needed in the bedroom to help the person with MND keep safe during the night. That equipment makes it very difficult for a spouse or a partner to sleep in the same room. Often, the carer will sleep in a second bedroom and catch some much-needed sleep.
William, who has MND, and his wife Carol live in the west of Scotland and have two wheelchairs. They have been subjected to the bedroom tax. They will go on the local authority waiting list until a suitably adapted one-bedroom property is found or one is adapted for them. William and Carol should never have to go through that.
I do not even have time to go into the personal independence payment but, again, families are being forced to go through the assessment.
I could not say this any better than MND Scotland says in its report, so I will just quote it:
“We appeal to the UK Government to alleviate some of the burden for people with MND and their families. We urge them to adopt a common sense approach by acknowledging that not only are people with MND unjustly suffering through welfare reform—assessing them for welfare benefits they are clearly entitled to is a waste of taxpayers’ money.”
Let this Parliament—our Scottish Parliament—lend its voice to that appeal and urge the United Kingdom Government to have some compassion and think again about the real people involved.
17:11
I thank Christina McKelvie for bringing this important debate to the chamber.
We have heard that, every year, 130 people in Scotland are diagnosed with motor neurone disease. MND is a rapidly progressing terminal neurological disease, and people who are diagnosed with the illness usually become severely disabled. Symptoms include the loss of their ability to walk, speak, feed themselves and breathe unaided. The damage caused by MND is progressive, and people who suffer from the life-limiting disease do not experience periods of improvement. Sadly, average life expectancy following a diagnosis of MND is just 14 months.
The motion asks us to acknowledge MND Scotland’s welfare reform campaign and the “Time to benefit people with MND” report. I commend MND Scotland for the work that it has done to highlight the impact that welfare reforms will have on people with MND, as well as all the work that it does to support people who suffer from the illness, particularly through advice and support services. Those services are mentioned in the motion but, unfortunately, I will not have time to come on to them in this short debate.
Most members agree on the devastating effects that some of the coalition Government’s welfare reforms are having and will have on our constituents and the areas that we represent. Simplification of the benefits system through the introduction of the universal credit is an example of where the UK Government has probably got the broad approach right. However, its approach goes awry in implementation and in the cutting of support for individuals.
The motion that Christina McKelvie has put before the Parliament highlights the bedroom tax, so I will concentrate my remarks on that measure.
We know that 79 per cent of households affected by the bedroom tax include a disabled person. Christina McKelvie is quite right to say that, for people who suffer from MND, the second bedroom is not a spare room but somewhere to keep their wheelchair, hoist, breathing equipment and speaking aids. That equipment keeps the person suffering from MND safe at night, but some of it can often be noisy, which means that their partner may need a separate room in which to sleep.
Furthermore, the houses are often specially adapted for tenants and owners with disabilities. Therefore, any move may incur more cost, as the new property would also have to be suitably adapted.
Local authorities have said that they do not have the housing stock available to meet the demands created by the bedroom tax. For that reason, as well as the injustices faced by individuals and groups of people with particular conditions, the bedroom tax is, at best, a misguided policy solution to a problem that is really about the lack of affordable and appropriate housing.
People with MND will be affected not just by the bedroom tax. The “Time to benefit people with MND” report also highlights the impacts that there will be from the changes to employment and support allowance and the introduction of personal independence payments, which are being rolled out this month.
It simply must be possible to achieve a fairer way of assessing need that recognises that people with some conditions will, unfortunately, not get better or even experience significant fluctuations in the severity of their conditions that mean that their capacity to work is likely to change drastically.
The position that sufferers of MND are in indicates that there are real problems with the system that the coalition Government is putting in place. Indeed, we should recognise that, as Christina McKelvie was right to highlight, the previous system was far from perfect for many of those people. Therefore, the situation represents an opportunity missed.
In closing, I return to the issue of the bedroom tax and I repeat something that I have said before—this Parliament as a whole, across the parties, has failed on the issue. I take the view that what Ed Miliband said last week about localising housing support decisions and coupling the issue of support with housing supply is, overall, the correct way to go.
Notwithstanding the Scottish Government announcements today, which did not clarify any plans for a separate Scottish welfare system, I accept that those people who support independence genuinely believe that Scotland on its own could create a fairer system. The issue for me is what we do in the meantime—what we do now for people who are affected by MND. On that issue, we as a Parliament have failed to put in place either the money, policies or guidance to protect people from being unfairly penalised by the bedroom tax.
I hope that all members who take part in the debate will resolve to come together and work together to deliver real support to the real people who are suffering—not just in 2014, 2015 or 2016, but today, in 2013.
17:15
I congratulate my colleague Christina McKelvie on securing this important debate.
I recall the day, just over a decade ago, when I was told that my Aunt Eileen, my father’s older sister, had motor neurone disease. Over the next 22 months prior to her death, my aunt became increasingly trapped in her own body, unable to move or speak, to her great torment. Her suffering caused great distress to the entire family, who felt helpless to assist her or to slow in any way her inexorable decline towards death.
Motor neurone disease occurs when specialist motor neurones in the brain and spinal cord stop working properly. Because of its poor prognosis, fewer than 400 people have the illness at any one time in Scotland. Motor neurones control important muscle activity such as gripping, walking, speaking, swallowing and breathing. As the condition progresses, people with MND find those activities increasingly difficult and eventually impossible to do.
MND is one of the rarest neurological conditions and mainly affects adults who are over 40. Most cases develop in people who are between 50 and 70 years of age. The causes are unknown, but it seems likely that genes are a factor, at least for some people with the condition. That is because 10 per cent of people who develop MND also have a close family relative with it.
Motor neurone disease is a degenerative condition that progresses rapidly and sufferers have complex needs that affect all aspects of their lives. Maintaining the ability to communicate is essential and every effort should be made to encourage advanced care planning to ensure autonomy during the course of the disease.
MND Scotland is the only motor neurone disease charity in Scotland providing care, information and funding for research and it believes that
“the last months of a person’s life should be spent in the loving care and support of their family—not going through highly stressful Department for Work and Pensions (DWP) questionnaires, interviews and medical assessments with the constant anxiety that the family could have their benefits removed at any point.”
MND Scotland also believes that
“putting people with MND through this process is illogical and a waste of taxpayers’ money”.
Indeed, it is just plain daft.
From 1 April 2013, as we have heard, social sector households that contain working age claimants of housing benefit who are deemed to underoccupy their property have had their housing benefit reduced. MND sufferers were inexplicably included. With the forthcoming introduction of universal credit and the resulting reduction of disability premiums, people with MND could also lose up to £70 per week from their benefit entitlement.
The DWP and the UK Government have not taken cognisance of specific groups in their blunderbuss approach to welfare reform. As Christina McKelvie said—it is worth repeating—there is a need to exempt people with MND from the work capability assessment, allocate them to the employment and support allowance support group and award full benefit.
It is also sensible to exempt from the bedroom tax those who have had their homes significantly adapted to their needs and who are unable to share a bedroom due to an array of medical equipment that is necessary to keep them safe during the night; to automatically transfer, without assessment, people with MND to the enhanced rate of personal independence payments when they are receiving high rates of disability living allowance mobility and care components; and, under special rules, to extend from six to 12 months the timescale in which death from terminal illness can reasonably be expected.
Families who are dealing with a devastating terminal illness such as MND should not be forced to go through the additional stress and anxiety that are caused by the cuts to the welfare programme. The UK Government should alleviate some of the burden for people with MND and their families. We urge it to adopt a commonsense approach by acknowledging not only that people with MND are unjustly suffering from welfare reform, but that it is cruel to assess them for welfare benefits that they are clearly entitled to.
Volunteers in the Scottish Parliament are being urged to participate in a project to record their speech potentially to help to reconstruct patients’ voices that have been damaged through motor neurone disease. Along with Christina McKelvie, I urge people to volunteer to help give patients their voices back as part of the MND voice bank project. The project, which will run in the Scottish Parliament for the next two months, is organised by the Euan MacDonald centre for motor neurone disease and the University of Edinburgh’s informatics team. Many individuals with MND and other devastating conditions such as stroke, multiple sclerosis and Parkinson’s disease lose their voice, and the project aims to use recorded donor voices to reconstruct the patient’s voice, as near to the original as possible.
17:20
Although I have no family experience of motor neurone disease, I am aware that it is an extremely debilitating disease that results in severe impairment of a person’s physical abilities and is ultimately terminal. Naturally, people with MND should, when required, have their additional needs supported through the welfare system.
I note that the UK Government is not cutting support to disabled people. The Government will continue to spend around £13 billion a year on PIP—the same as it does under the current system. The introduction of PIP will ensure that the billions that are spent give more targeted support to those who have the greatest need. As such, it is quite different from the unreformed disability living allowance.
The PIP assessment is an individual consideration of how impairments affect a person’s life. Rather than simply being based on medical conditions, it will consider the claimant’s specific circumstances and support needs. A wide range of help and support will be available for people making PIP applications. The overall process will be independently reviewed soon after it is introduced to ensure that it is working effectively.
The fact is that there will be difficulties as a result of the transition to the new benefit. Many of those have been highlighted in today’s debate. Issues concerning the underoccupancy charge should be dealt with effectively through either the list of exemptions or the discretionary housing fund. However, for those who have been recently diagnosed and for those whose condition does not deteriorate quickly, there has been some concern about the way in which that has been handled.
I commend MND Scotland for highlighting the problems that exist, and I am keen to ensure that, wherever possible, the views that it has expressed are taken into account. I will raise the matters that have been raised by MND Scotland with representatives of the Westminster Government at the next opportunity that I have to meet them. I will ensure that, where the process that we have in place results in poor or inappropriate outcomes, that process is assessed, adapted and changed to ensure that it meets the needs of those who depend on the support that the new benefits will supply.
17:22
I thank Christina McKelvie for bringing this debate to the chamber. I understand how difficult it can be to talk about something that is so hugely personal. Normally, when I am in this room discussing such things, I am talking about Stacey and multiple sclerosis. It is hard for us to talk about such subjects, as we are aware of everything that goes on, and we feel the pressure to deliver on behalf of the organisation that we are highlighting.
My first run-in with MND was when I was a child and my gran’s sister deteriorated quite quickly. I did not understand how this woman, who used to work in the mill in Paisley, could no longer speak—how, all of a sudden, she just could not function any more.
People have always motivated me in my politics. I am aware of and understand Christina McKelvie’s family involvement with MND. Working to support families in Paisley has been a major part of my life. Eileen Clark, the mother of a good friend of mine, Councillor Lorraine Cameron in Renfrewshire Council, was diagnosed with MND when I was on the council, too. I saw her change from a bright woman, who was involved in the community, to a person who was dying—it is, effectively, a death sentence.
I spoke to Lorraine Cameron today and asked whether she would mind if I spoke about her experience. She said, “No, George. I want people to know about it.” I also made a joke involving the mental health problems that Lorraine had during that period, because of the strain and pressure that she was under. I said, “I’ll not tell them about the time you went aff yer heid,” and she said, “No, tell them. That’s an important part of it. The families feel the strain. I don’t know anyone in MND Renfrewshire who isn’t on antidepressants—they are the family members who are dealing with the situation.” Lorraine told me about the times when she would sit there at night and listen to her mother breathing in the next room. Had she stopped breathing? Was she okay? People deal with that for years, knowing what the outcome will be.
As Christina McKelvie said, according to MND Scotland, a person’s life expectancy from diagnosis is about 14 months. That is 14 months for families to watch their loved one deteriorate at an alarming rate in front of them and be unable to do anything. On top of that, families have to get their loved one’s housing situation sorted out and arrange any adaptations. By its very nature, the disease is difficult for local authorities and Government organisations to assess. A person can be okay at one point, then deteriorate so much that their house is adapted for them, and then it is too late.
In addition, there are the benefit reforms, which will be a dramatic change. In “Time to benefit people with MND”, MND Scotland has done an excellent piece of work, in which it raises issues that we take for granted. I agree with MND Scotland when it says that
“the last months of a person’s life should be spent in the loving care and support of their family”.
That is how it should be. People should not be worrying about assessments and whether they can get DLA or PIP, as it is now.
Christina McKelvie could not mention PIP, so I will go on about it. From October, anyone who receives a diagnosis of MND will be assessed for PIP. Those who currently receive DLA and report a change to their illness will be reassessed. Under PIP, due to the loss of a lower rate of benefit, many people in the early stages of their illness will lose out financially. As Christina McKelvie mentioned, people will have the financial burden as well as their illness. They will feel as if they are a burden on the family. Eileen Clark felt the same way. She got to the stage at which she felt that she was holding her family back.
I stress that we are literally dealing with people’s lives and with families. The last thing that people need is worry about going through assessments for various benefits. We need to show some humanity and ask the Westminster Government to think again on the issue.
17:27
I, too, thank Christina McKelvie for bringing the issue to the chamber. She is a great champion for those with motor neurone disease. As she has explained, it is something that she cares deeply and passionately about.
We have heard many heart-rending stories about the impact of the condition on people and their families. I thank MND Scotland for its invaluable support for people living with the illness.
Given the prognosis, we know that people with MND need immediate support and care. It is important that they get the right support at the right time from the health service and social services, and that support is all the more important as the UK Government’s ill-judged cuts and changes to the welfare system take effect. I know that those reforms are causing a great deal of worry and upset for many people. One of the biggest concerns continues to be the flawed work capability assessment. The DWP has made it clear that, unless a condition is terminal under its definition—which is when a doctor says that life expectancy is six months—there is no automatic exemption from assessments, regardless of disability or health condition.
However, the DWP can decide whether to refer someone for an assessment at the start of a claim based on the evidence provided by the person making the claim and their healthcare professional. We have heard from everyone tonight about MND and life expectancy with the condition. In many cases, it is an absolute nonsense that people are sent for an assessment. I would agree with all the members who have said that—Kenneth Gibson described it as “plain daft”. Nevertheless, the DWP seems to be failing to take account of the evidence that is being provided to it. That is backed up by the many letters that we all receive on the issue.
The Scottish Government has raised concerns about the welfare reforms with UK ministers on several occasions. Recently, the Deputy First Minister wrote to Iain Duncan Smith specifically about the work capability assessment process. Despite three independent reviews, that process is still not working and yet another review—to be carried out by Dr Paul Litchfield—is under way. We have pressed the DWP to ensure that the latest review finally produces a process that is fair and equitable.
As we have heard from many members, the bedroom tax is another flawed policy that just will not work. The example included in the motion is a tragic case that demonstrates perfectly the indiscriminate effect of this shameless reform. The bedroom tax takes no account whatever of the circumstances of the individual concerned. Of those households in Scotland that are affected by the bedroom tax, 79 per cent contain an adult who has a disability that is recognised under the Disability Discrimination Act 1995.
During the passage of the Welfare Reform Bill, the Scottish Government made clear our objections to the reforms and asked for them to be withdrawn. We were especially mindful of the impact on disabled people, so we pressed for a specific exemption to safeguard those whose houses have been substantially adapted, often at considerable cost to local authorities. Although the UK Government acknowledged the issue, its preferred response was to increase discretionary housing payments so that local authorities could deal with what it described as the “hard cases”. The response was specifically aimed at those who have substantially adapted housing, but it does not provide the safeguard that a statutory exemption would provide. If exemptions can be made for foster and kinship carers and for those who serve in the armed forces—and I welcome those exemptions—surely people in substantially adapted disabled houses should also be exempt.
Scotland receives 6.5 per cent of the total DHP budget. Scotland and London have the same number of claimants who are affected by bedroom tax, but for 2013-14 Scotland will receive £10 million in DHP compared with £56.6 million for London. That is not fair, especially given that the original problem existed not in Scotland but in the south-east of England and in London in particular. I have repeatedly asked, and will continue to ask, for an increase in discretionary housing payments to alleviate the impact on our most vulnerable people and those with an illness or disability. The bedroom tax simply has no place in Scotland.
I note that the expert working group on welfare has today published its report, which I am sure will be an important staging post in the debate to come. I welcome the working group’s contribution and I note some of the themes emerging from its report, such as the need to treat people on benefits with respect. I echo those calls. People who are too ill to work or who are unable to obtain work should not be stigmatised. They do not choose to be in the position that they are in, so they should not be penalised for it.
At heart, the independence debate is about choices. It is about ensuring that the key decisions about what we want from our society and about Scotland’s future are made by the people who live and work in Scotland. We will be able to achieve a fairer welfare system for Scotland that ensures fair and decent support for people only through independence and with full control over welfare issues. I know that this is not a political debate, but, in response to Drew Smith, I point out that all parties in Westminster are now committed to keeping the bedroom tax and to keeping the benefits system as it is. There will be no improvement there, so the only option is the one that we are putting to the people of Scotland. That option would give us control of our own welfare system and would allow us to make decisions that are right for Scotland.
We have already set out measures that the Scottish Government will take in the event of a yes vote, such as repealing the bedroom tax and separating housing benefit from universal credit. As a Scottish Government, we have a high level of ambition for Scotland and our people, and we are determined to address the root causes of poverty and inequality by bringing about the change that our nation and communities need. People who are suffering from illnesses and long-term conditions should not need to go through the indignity that they currently go through under the present welfare system.
Meeting closed at 17:34.