Dementia and Alzheimer’s Disease

Debate between Mark Williams and Jim Shannon

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

I would need to the wisdom of Solomon to answer that question. Personally, I do not know; perhaps it is society or how we live. People are living longer and, by the very nature of living longer, we have such problems. There are probably a number of issues involved and reasons for that. However, early diagnosis, follow-on care and end-of-life care are fundamental.

There is a need to raise awareness among people with dementia and their carers about the disruptions to vision and eye health that might be concurrent with or arise from dementia. We therefore need to emphasise the importance of regular sight tests and eye examinations.

The Mental Health Charter for Sport and Recreation has done some interesting and outside-the-box things for people living with dementia. Along with partners, they have delivered a dementia-friendly swimming initiative, which is steadily expanding across the country. That is an absolutely fantastic way to help improve quality of life. It is amazing how not-for-profits are putting in the hard graft to make heart-warming things such as that happen, often with no funding. It is amazing what a group of dedicated, selfless individuals can do, as has been mentioned.

[Mr Mark Williams (Ceredigion) (LD)]

I thank the hon. Gentleman for giving way and I apologise for missing his opening remarks. Will he take the opportunity to commend the many local communities that have sought dementia-friendly status, meaning that a visit to the shop is not too embarrassing or a stigmatising event for sufferers or their carers?

Domestic Oil Purchasing Syndicates

Debate between Mark Williams and Jim Shannon

Monday 7th December 2015 Commons Chamber

[Mr Williams]

I am pleased to see that the Minister acknowledges that.

The development of domestic oil purchasing syndicates is an important and growing trend in many areas of the UK. [Interruption.] I welcome the hon. Member for Strangford (Jim Shannon) to his place; I was wondering where he was. Those syndicates are helping many communities to save substantial amounts of money by buying their off-grid fuel collectively. This is also helping to tackle the serious issue of fuel poverty in many parts of the country. That issue is not unique to rural areas, but I want to concentrate on those areas this evening.

When communities organise to combine their orders, whether they are communities of single numbers or hundreds, they can negotiate discounts with suppliers by decreasing the number of vehicles that the supplier needs to send to an area, and guarantee the purchase of all the fuel delivered. So there is a gain not only for our constituents but for the suppliers. These arrangements can help substantially to decrease the cost to each member of the syndicate or club, and help to tackle some of the most pressing problems associated with the cost of fuel. Fuel prices represent a serious problem for many rural communities, including not only the scattered hamlets but the bigger towns of my constituency.

In Wales as a whole, 20% of all households still have no access to gas from the grid and are reliant on more expensive forms of fuel, such as oil and coal, as their main source of heating. I have the privilege of representing Ceredigion, a vast tract of rural west Wales with 700 farms and 147 communities. That gives hon. Members an idea of the kind of rurality I am talking about. In my constituency, a majority of households—69%—do not have access to mains gas, and many people are therefore reliant on the more expensive means of heating their homes. This issue is not limited to Wales. Sizeable areas of the United Kingdom, from the west country to the highlands of Scotland—and, I dare say, Northern Ireland as well—have a substantial number of households that cannot access mains gas. The choices available to those households are therefore limited.

The higher cost of off-grid fuel is compounded by other factors such as the age of the housing stock and poor energy efficiency—something that is especially problematic in rural communities with large numbers of solid-wall detached houses. Beyond the image of the beautiful countryside with its thatched cottages and clotted cream, there lies a deeper problem relating to heating houses and keeping our residents warm. There is an attractiveness to many of those isolated rural homes during the summer months, but it belies the reality of living in such old housing stock during the winter. Finding ways to ensure that families and vulnerable people living in rural areas are able to keep warm during the winter months is a major challenge that we must tackle on a cross-party basis.

The huge potential of oil syndicates in tackling fuel poverty was first brought to my attention by the late Jane Wakeham, a constituent of mine from the famous, or infamous, village of Llanddewi Brefi. I should declare an interest, as my home on the clifftops of west Wales is oil supplied and my wife, who manages these things on behalf of our household, actively seeks out syndicates wherever they are.

[Jim Shannon (Strangford) (DUP)]

This is an important subject, and it is always nice to speak about these matters in Adjournment debates. In my area, if a group of elderly people or syndicates come together, they can buy together, get the delivery at the same time and save up to 8p a litre. Does the hon. Gentleman feel—perhaps the Minister will also reply to this—that we should put more focus and emphasis on the elderly, because people are living longer?

[Mr Williams]

I very much agree with the hon. Gentleman about that. He would also recognise that elderly people and less advantaged groups in our society are looking for the lead that somebody in a syndicate can give them so that they can get the benefits and reductions in their fuel bills to which he alludes.

Jane Wakeham got in touch with me some years ago as she was seeking my support in applying for funding from the Department of Energy and Climate Change to help set up a fuel club. Under the previous Administration and our coalition Government, there was a time when a small pot of money was available that people could apply for—it was described as a competition—so that best practice was encouraged around the country, and I will ask the Minister a little about that later. Were Jane still with us, I know that she would be greatly impressed by the work of Clwb Clyd—or Club Cosy—in my constituency. That project was funded over an 18-month period by the Welsh Government and run by Ymlaen Ceredigion—I commend the work of Rachel Lilley and her colleagues there—on behalf of Ceredigion County Council, which has brought together fuel clubs throughout the county.

It was through an attempt to tackle fuel poverty in the fuel poverty forum in my constituency that the Club Cosy project came about. With representatives from the county council, the local health board, local housing associations, the West Wales Credit Union, Age Cymru—this goes back to what the hon. Gentleman said about elderly people—Citizens Advice and others, the forum began to explore the work done by oil clubs in the county, and explore the benefits of bulk fuel purchasing and overcoming the problems of minimum purchase ordering. For people on a low income the issue of the minimum purchase order is very important, as it is very difficult for many people to purchase that minimum. There is a serious concern about the many reports of constituents filling their own containers at garages, and filling their own tanks in their yards or their gardens—we should be avoiding that at all costs.

Before the Club Cosy project, coverage in Ceredigion was patchy, the number of co-ordinators was small, and there was very little co-ordination between clubs covering different areas of the county to maximise and co-ordinate their purchasing power. Since the project started, the number of co-ordinators has increased, coverage has improved to cover the entire county, co-ordination has improved and the number of syndicate members has more than doubled. Crucially, awareness has been raised, so that people know that if there is a challenge to household budgets, and my goodness there is, there are alternatives that can be pursued. In addition, the project has included specific work with syndicate co-ordinators to target and identify the fuel poor. Co-ordinators are going out into the community, rather than waiting to be asked. We have had targeted roadshows with housing associations, energy advice being offered directly in the home, and work being done specifically with the most vulnerable households through joining a syndicate. The experience from the Club Cosy project has been used to develop a document, which I will send to the Minister, explaining how sustainable models for fuel syndicates can be established, which should be helpful to other parts of Wales and further afield.

There are thousands of fantastic schemes across the country. My right hon. Friend the Member for North Norfolk (Norman Lamb) has told me about the Thinking Fuel project in his constituency, which provides similar help to local communities to improve co-ordination, lower costs and help decrease the number of people living in fuel poverty.

One syndicate in my constituency has recorded savings of anything from £26 to £76 for every 1,000 litres ordered. That is a 10% saving over an 18-month period, making a substantial difference to many households. In many cases, this has helped people on long-term agreements with fuel suppliers to revisit and review their current arrangements, often finding that they have been paying substantially more than they should have been.

There are also other benefits to forming syndicates. A syndicate of just five households in one hamlet can reduce the number of tankers travelling to deliver their fuel from five to one—an obvious, but useful statistic—which is a fact that is not lost on the companies themselves.

We can see benefits to the local economy through the uptake in bulk-buying clubs. In Llanddewi Brefi, orders are placed via the local shop and pub, enhancing their status as real community hubs. In Siop Cletwr, Tre’r Ddol, the syndicate has added value to other services in the community shop, again helping to sustain the local economy, while in Tregaron, £1 charged per order is ploughed back into the community hall fund.

The project funding for Club Cosy has now come to an end, but the legacy is firm and rooted, and I think it will continue to prosper in the future. The principle behind oil syndicates is something that we can all endorse. I am talking about collective action on behalf of customers to realise economies and bring substantial benefits to people through lower fuel bills. These community-spirited individuals often work in disparate and isolated communities, and in the case of Club Cosy, work closely with fuel distributors as well.

This is an issue that potentially affects huge numbers of people throughout our country. Unashamedly, I want to use this opportunity to celebrate this great scheme in my constituency in the expectation that others will look closely at what has been done, and follow in its footsteps.

As I mentioned earlier, work was undertaken under the coalition Government to push oil clubs on to the agenda, and some minimal funding was made available. I look forward to hearing from the Minister that that work is continuing, because it is important. The support needs to continue because there are still some big unanswered questions. Connecting communities to the gas network may well negate the need for oil clubs, but fracking may assist in some areas.

The gas network as we know it simply does not allow for the distribution of piped gas in many rural areas. The choice available is an issue. Quite rightly, the Government talk about switching within specific forms of energy, but we do not have the choice in many rural areas. That presents a problem to Governments both at a Westminster and a Welsh level, and to the communities that are struggling to cope with bills.

I must commend the work of third-sector organisations, which are well equipped—they are not well resourced—to advance the cause of switching. The citizens advice bureau in Ceredigion and Age Cymru have made a real difference to helping people switch. That is important. Third-sector organisations need support in advancing that cause.

There are good and bad negotiators. Some of our fellow citizens, if they are provided with the right information, will be good at arguing their case for switching and for better tariffs. What better way of seeking a cheaper fuel tariff than having someone to take a lead in the negotiations? Again, that is one of the benefits of this scheme.

When I speak to syndicate co-coordinators, one issue keeps cropping up: funding. Funding is available through the Department of Energy and Climate Change for those attempting to save energy and keep their homes warm. Initiatives such as big energy saving week are laudable, but many syndicates find it difficult to access even the most basic core funding. The benefit of having a group of individuals taking the lead on this issue cannot be overstated and funding is therefore important. We need to continue to consider ways of disseminating best practice. Will the Minister look into this issue and ensure that oil syndicates can apply for that support and that those who choose which projects to fund, if funding is available, are particularly aware of the needs of rural communities?

Another important point, which again relates to the issue raised by the hon. Member for Strangford (Jim Shannon), concerns elderly people. Much of the switch agenda is advanced through the internet and through emails, and as I say in any debate that mentions Ceredigion, there are limitations in the broadband roll-out. There is also a demographic divide, as older people are less confident. Again, that points to the benefits of syndicates, as people do the work for their members. Will the Minister detail what action she can promise to help encourage and support the uptake of domestic oil purchasing syndicates more widely?

I am mindful of the time—we waited for this Adjournment debate—but I want to give just one example of a constituent of mine who has benefited from Clwb Clyd, or Club Cosy. The Club Cosy coach visited my constituent at her home on a social housing estate in Ceredigion, an area where there is a high risk of fuel poverty. She was living in a cold and draughty house and her boiler was using excess amounts of oil owing to a thermostat fault. With high bills, paying for oil was a real worry, eating up a huge amount of her limited budget. Tailored advice was given on draught proofing, joining a syndicate and applying for a credit union fuel account. Her response, besides gratitude, was to become so interested in the fuel syndicate idea that she started one on her own with her neighbours on the social housing estate. She was included in Club Cosy’s networking activities and events, and the club has gone from strength to strength. Many of her neighbours have benefited from her initiative. Yet again, that is a good example of an excellent community project making a difference for a lot of people in my constituency.

I hope that I have proved that what might have seemed at first to be a lofty subject for a debate—development of domestic oil purchasing syndicates—is an issue of great significance for a great number of people in my constituency and elsewhere. I commend the work to the Minister who, I know, is supportive. I look forward to hearing what she has to say.

Atos

Debate between Mark Williams and Jim Shannon

Wednesday 12th February 2014 Westminster Hall

[Mr Williams]

I thank the hon. Lady for that intervention, which she had notified me she wanted to make. She talked about multiple processes, and she is right; in particular she is right about the delays and the anxiety they cause.

There are reports of some disabled people waiting more than six months for face-to-face assessment; scheduling problems; last-minute cancellations; and difficulty in getting to assessment centres. I represent a large rural constituency in the west of Wales and access to assessment centres is a critical matter. We must factor in the lack of public transport and people’s difficulties in getting to their interviews.

That should all be seen in the context of the fact that many claiming benefit are doing so for the first time, after experiencing a catastrophic, life-changing event such as an accident, the sudden onset of disability or the deterioration of an existing condition. They face an urgent need for support, given the sudden extra costs. Everyone in the Chamber acknowledges that delay is unacceptable, although of course new systems have teething problems. I should emphasise, however, that not one of us, of whatever political persuasion, has a monopoly on empathy with the problems, which are understood by the Government, the Opposition and all parties. Nevertheless, I question the capacity of existing providers to carry out the work. The Minister is in a difficult position, because the tendering process is being embarked upon, but I hope that he can allay my fears.

I sought the debate because of the increasing numbers of constituents who are coming to my surgeries, writing to me and e-mailing me, and are facing the stress and anxiety of going through work capability assessments carried out by Atos for the DWP. That is perhaps inevitable given the increased pace of assessments but, as a result of, some would argue, the inappropriate system and process, many of our constituents are told that they do not qualify and are indeed fit for work. The constituent then appeals, but can be left in a state of limbo while this process takes place—delays take months or even years. One of my constituents had an assessment two years ago, but the case is still not resolved.

In response, local agencies such as Jobcentre Plus, Citizens Advice and the DWP itself have been advising my constituents to contact me to assist with their appeal or the speed of their claim. I would never turn a constituent away on any bit of casework, however big or small, because that is our duty and our function, and I am supported by excellent staff here in London and in Aberystwyth, so we will help in any way. There is something wrong, however, if DWP staff are themselves referring people to their MP. In one case, a DWP member of staff told my constituent to contact me to complain about the service. As such, it is my duty to bring these matters to the Minister’s attention.

[Jim Shannon (Strangford) (DUP)]

This is such an important issue, not only for the hon. Gentleman, but for every one of us in the Chamber and for many outside. In addition to the examples he has rightly mentioned, I have a constituent who has ulcerated colitis and has been retired medically as a civil servant. Her doctor and her physiotherapist support her. In the appeal, however, she was declared fit for work. There is something seriously wrong with a system that ignores medical opinion and suggests that people can work, when they clearly cannot. Should the Minister take that on board?

[Mr Williams]

The hon. Gentleman highlights a mismatch between the appeals process and the initial adjudication or assessment. I will come on to that. I am sure the Minister is mindful of it, although the hon. Gentleman is right to highlight it. As I said at the start of the debate, the situation is not unique to my constituency; it is commonplace in every constituency in the country.

--- Later in debate ---

[Mr Williams]

My hon. Friend is right. I am not approaching the subject on a particularly partisan basis, because the problems are experienced in all constituencies, but he is right to talk about the circumstances in which this Government are dealing with the legacy of decisions taken under the previous Government. He is right to highlight that. I have every sympathy with many of the campaigning groups, on behalf of which I will talk in my later remarks, but we need to remember the origins of the decision, which the Labour Government made.

I want to talk specifically about delays. I met Atos representatives yesterday, so I know that they recognise the length of time taken to complete the process. One of my constituents, who I will call Mr P, had his Atos assessment two years ago and was failed. He appealed, and the appeal took eight months to be heard. The appeal judge took only three minutes to uphold the appeal. His backdated benefits were paid, but two months later he received a letter summoning him to another Atos assessment, because the process had taken so long from start to finish that the 12-month period before reassessment was almost up. At the second Atos assessment, my constituent was unable to complete some of the tests without causing himself considerable pain and anguish, so they were stopped halfway through. This went down on his medical report paperwork as a refusal.

The case, now complete, has gone to the ombudsman, and I would like to quote a section from my constituent’s letter to the ombudsman:

“I have paid my NI contributions and taxes all my life believing I would be protected by the welfare system should anything untoward happen to me. For 2 years I was afraid to open my post in case it was another letter stopping money...or another assessment. During this time I have been in pain, had needles...surgeons knives, ligaments removed, bones cut and metal plates inserted into me but I am still made to look like some kind of scrounging criminal by a system that was meant to protect me.”

I condemn certain sections of the press for the way in which they have characterised benefit claimants. A gentleman who is genuinely seeking support from the welfare state, into which he has paid all his life, is seemingly being let down.

In many cases, our constituents want to get on with the process of recovery and do not see benefit claiming as a long-term situation, but the delays make their condition worse. Another constituent who I am dealing with—she, too, will remain anonymous—said:

“I am currently receiving treatment and therapy and my therapist is not keen to discharge me yet. My health is not improving and is in fact being made worse by the anxiety caused from this void of information. I was feeling quite positive at one time that I may be put into the Work Related Activity Group…as this would be a great stepping stone to getting back into work from sickness, but I currently feel so low because instead of being helped forward towards getting back into work, I am stuck in an uninformed place that is not helping me recover at all.”

That indicates to me that the process for some conditions —by no means all of them—is making situations worse and adding anxiety to something that is already causing considerable stress to people.

In developing the debate, I am talking about some of the principles that I believe—I am sure people in all parties believe—should be governing our assessment system. My concern in addition to the delays is that the work capability assessment is not fit for purpose. Indeed, the charity Mind informs me that around 40% of people who are found fit for work appeal against the decision; of those who appeal, almost 40% win their appeal. As we know, capability to work is about not only those suffering with physical disabilities—it might be easier for ATOS assessors to see and report on a tangible factor—but those suffering with an invisible illness. This is true in particular of constituents who are suffering with mental health issues, or conditions relating to autism, which is an especially interesting example.

In my constituency, I was pleased that an excellent charity, Autism Cymru, developed a project to train people in the DWP to have greater understanding of the condition of autism. I used to be a primary school teacher and we had minimal training on this, but one thing that impressed itself on me was one particular feature of autism: asking a direct question gets a negative response. That is the nature of the condition, and it needs to be borne in mind in the assessments. The charities Rethink, Mind, the National Autistic Society and Citizens Advice have all made that point to me. I therefore ask the Minister to reiterate the Department’s concern and to ensure that, whichever providers undertake the work, the assessors are appropriately trained in complex conditions such as autism and mental health, so that the clients may be—and see themselves to be—assessed fairly and comprehensively.

Last autumn, with other Members, I undertook a mock assessment organised by the charity Rethink, to give MPs the experience of taking a work capability assessment. At that meeting was a Rethink campaigner, the retired vicar Dick Acworth, whose son has bipolar disorder and yet was deemed fit for work. People such as Dick’s son with a supportive family are lucky to be able to face the appeals process together, but there must be concern about the number of people who do not appeal, because they cannot face it, or simply do not know how to go about it, and they are very much left to struggle alone.

[Jim Shannon]

Does the hon. Gentleman agree that when someone has medical evidence from GPs, consultants and physiotherapists—people who know about the medical condition of their patient—it is important for Atos and for the Department itself to take greater cognisance of that medical evidence? It seems that that is not always the case.

[Mr Williams]

I thank the hon. Gentleman for making, once more, that point. It is critical that all due consideration is given. I do not agree with the characterisation of constituents as simply going down to their doctor’s surgery, presenting a letter to the doctor and saying, “Sign this”, and then that letter being presented as part of a package for an assessment, or indeed a tribunal. Doctors are the experts. They know their patients and the situations in which they operate, and we need to give them all due consideration.

Concerns have also been expressed about people suffering from progressive illnesses such as cystic fibrosis, multiple sclerosis, Parkinson’s disease and rheumatoid arthritis. It has been asked whether the work capability assessment is fit for purpose for them. I am not sure whether the Minister has received it yet, but I recently signed a letter to him from colleagues from across the House—it is on its way—raising that concern. Organisations working on behalf of people with progressive conditions have found that that 45% of people with those conditions who put in a new claim for ESA between 2008 and 2011 were placed in a work-related activity group and deemed able eventually to return to work. The placement of those individuals represents the Department’s recognition that they were unable to work at the time of the assessment, yet some were given a recommendation for a return to work in few months’ time. But that directly contradicts the definition of a progressive condition, which of course can get worse over time. The letter is on its way, and I am sure that the Minister will respond to it even if he does not do so today.

I will move on to the flexibility of descriptors. I understand that Atos and Capita are under contract to the Department—I was going to raise at this point the point made by my hon. Friend the Member for Gloucester (Richard Graham) about the origins of those contracts—but Atos does not set the descriptors; they are set by Government. Given the concerns that many organisations in the third sector have about the descriptors, will the Minister tell us—I suspect I know the answer—what dialogue he has had with the third sector and what opportunities the third sector has to raise such concerns?

Autism

Debate between Mark Williams and Jim Shannon

Tuesday 20th November 2012 Commons Chamber

[Mr Mark Williams (Ceredigion) (LD)]

It is a privilege to speak in this debate, and I congratulate the hon. Member for South Swindon (Mr Buckland) on persuading the Backbench Business Committee to allow it. Like the hon. Member for Strangford (Jim Shannon), I praise the hon. Members for South Swindon and for Stalybridge and Hyde (Jonathan Reynolds) for their personal insights. Such insights are critical to the debate and warmly accepted by Members on all sides of the House.

Following the hon. Member for Strangford, I want to bring a Welsh perspective to the debate. In one sense, the hon. Gentleman has usurped me. I was going to say that Wales is leading the way through the development of its autism strategy, but sadly it seems that Northern Ireland is doing that. I hesitate to say that, however, because this matter is too important for one-upmanship. Nevertheless, I agree with the tone of his remarks because there are useful pointers and experiences from Northern Ireland, Wales and, no doubt, from our friends in Scotland as well to share with the Minister.

[Jim Shannon]

As I said in my introduction, the Northern Ireland Assembly has a close relationship with the elected Assembly in Wales. There is a real partnership together and a way forward.

[Mr Williams]

The hon. Gentleman is right and I suspect that our mutual friends in Autism Cymru, which is based my constituency, and Autism Northern Ireland have given us a similar brief about the collaboration between those two groups. Sometimes devolution can be helpful to our colleagues in England if it involves sharing good practice. We do not always get it right, but in this instance we have good examples to share with the Minister today and, in that spirit, I will explain some of those experiences. Like the hon. Member for Strangford, I can speak for my friends in Autism Cymru who would be more than happy to share some of their experiences with the Minister.

The Celtic nations partnership, which is made up of colleagues from Scotland, Wales and Northern Ireland who work together on these matters, has said:

“Developing national autism strategies supported by ring-fenced Government funding for autism is proving vital to improve the lives of people with ASD, and their families.”

Wales has had an all-age strategy for autism for four years. Since it started in 2008 some £12 million has been committed by the Welsh Assembly Government to the implementation of that strategy and, critically, to research into autism. Wales is the only nation with a national autism research centre, and it is based in Cardiff.

All 22 Welsh local authorities have an autism spectrum disorder local lead, and some have specific leads for children as well as adults. A national co-ordinator sits in the Welsh Local Government Association, and a national ASD practice website gives examples and shares practice throughout Wales. In my part of Wales, services and information are provided in both English and Welsh. As part of that process, each local authority has a local stakeholder group, and we should not understate the significance of that. This is about service delivery, people’s experiences and parents talking about their children. As the hon. Member for South Swindon said at the start of this debate, this is not about ticking boxes. Meetings and engagement with stakeholders are important. Every one of those authorities has had a local action plan in place since 2009. They are being reviewed and renewed depending on local need.

I hesitate to quote myself by saying that Wales is streets ahead, but I say that in the spirit of generosity to which I alluded at the beginning of my speech. The challenge is as great in Wales as it is in England, but we have the frameworks and structures in place to assist.