Epilepsy

Laura Sandys Excerpts

Thursday 26th February 2015 Commons Chamber

[Laura Sandys (South Thanet) (Con)]

I beg to move,

That this House has considered epilepsy.

I would like to start by thanking the Backbench Business Committee for allowing my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), who has done so much to support and advocate on behalf of people with epilepsy, and me the opportunity to have this debate. It is a great honour to be able to open this debate in the presence of so many fellow members of the all-party group on epilepsy, who over the past five years have worked together to ensure that we raise epilepsy issues with all the relevant Departments. However, I personally feel that I might not have done enough. There is still so much more to do to ensure that epilepsy has its rightful place in health and social care and that it is seen as a chronic condition that needs greater attention, greater support and—this is very close to my heart—much less stigmatisation.

[Mr Mark Prisk (Hertford and Stortford) (Con)]

I am grateful to my hon. Friend for giving way and sorry to interrupt quite so early in her speech. I strongly support her and my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) in securing this debate. Like my right hon. Friend, I am blessed by having a national epilepsy centre in my constituency, but I still have constituents who worry about stigma. In particular, Rachel Dawes and Susan Gayler feel that even now, despite having a national centre of excellence locally, the issue of stigma is important? Does my hon. Friend agree?

[Laura Sandys]

I most certainly do. Addressing stigma is at the heart of the treatment, care and, frankly, funding for epilepsy. Too often it is swept under the carpet. For example, statistically there should be many more Members of Parliament who have declared themselves as having epilepsy. That is because of the stigma and the overall environment for people like me—I am a sufferer, as is my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard)—so no doubt there are more Members of Parliament who have epilepsy.

[Sir Bob Russell (Colchester) (LD)]

Part of the training for first-aiders is how to deal with epilepsy. Does my hon. Friend agree that if first aid were part of the school curriculum, more people would be able to deal with such situations?

[Laura Sandys]

I know that first aid in schools is an issue that the hon. Gentleman is very passionate about. I absolutely do agree. This condition impacts one in every 100 people; it is a very large-scale chronic condition. When a child falls to the floor in school, they need people who are confident to deal with them—who know what the issues are, can calm the rest of the classroom, and understand that this can be managed and supported. If people in authority do not know how to respond—we have examples among the police, those in schools, and even nurses—they feed the stigma, feed the problem, and feed the anxiety around people with this condition.

I feel that we have not done enough to push for greater change and greater focus, and to ensure that Government and the charities have greater ambition for people with epilepsy. However, I think we have done a reasonable amount, and I hope that over time we will do much more in this place and outside.

Stigma is one of the problems. Epilepsy is not trendy; it is not a fashionable condition. It is not information that people volunteer when they make a job application. I can assure Members that one does not talk about it as a set-piece at social events when describing an illness during the week. People with epilepsy frequently try to disguise it; we can see it in their eyes. I have always been very clear about it, because I believe that we should take away the stigma. We cannot normalise it, because it is not a normal condition, but we can make it something that needs to be addressed in equality with other chronic conditions.

[Kate Hoey (Vauxhall) (Lab)]

Does the hon. Lady think it shocking that in this day and age a very large public body like Transport for London—London Underground —could sack a young woman for the fact that she has epilepsy? Does she agree that we cannot allow this to happen?

[Laura Sandys]

I very much welcome that intervention. I was going to mention that case, which is extraordinary for two reasons. First, why would the young woman lose her job? She already had the job and was succeeding in it, so why was the sudden revelation of her epilepsy a reason for losing it? Secondly, her manager said that it had absolutely no impact on her ability to perform her role.

This is, in many ways, a 19th-century attitude. It is the expectation that when one tells somebody that one is epileptic, they expect one to be dropping to the floor foaming at the mouth. Many in this Chamber may not know that until the 1970s I, as an epileptic, would not have been allowed to marry—although I am sure that many did because they did not declare that they had epilepsy. That is the sort of stigma that we were dealing with not so long ago. It is a Dickensian, 19th-century perspective. I believe, fundamentally, that that lies a little at the heart of why, for a chronic condition that impacts one in 100 people—more than many other conditions—epilepsy does not get the right level of attention. This is an important task for us here in the Chamber and for the all-party group on epilepsy, and for me to continue outside this place. Many other conditions have overcome embarrassment and stigmatisation. It is absolutely crucial that we start to address this through our public services, our schools and education system, and our hospitals and GPs.

It is important that those of us with epilepsy are much more vocal. I hope that the Serjeant at Arms will not come and arrest me, but my hon. Friend the Member for Blackpool North and Cleveleys and I have actually broken the rules of the House. We did not exactly sneak up Big Ben, but we broke the very clear rules saying that anyone with epilepsy is not allowed to go and look at it. We thought, “You try and catch us!” We broke the rules of the House, and went up to the top. We have used that as a platform for saying that we should both contest it when epilepsy is not supported effectively enough, and challenge people who do not understand epilepsy enough and are fearful of those who have it. We think it took 150 years for somebody with epilepsy to go up Big Ben, and we are trying to identify other rules that we can break, so if hon. Members hear that my hon. Friend and I have got into trouble, they will know what it is all about.

Epilepsy has a very wide range of symptoms. I am very lucky to have very mild epilepsy. It is controlled and I am on medication, so there is no issue and I am very unlikely to have a seizure. However, it is incumbent on people such as me to be a voice for people who are suffering, and who may have a seizure every 10 to 15 minutes. I know that my right hon. Friend the Member for Chesham and Amersham, like Young Epilepsy and Epilepsy Research, very much focuses on people with chronic epilepsy. Such people do not necessarily have a voice, and it is for us to make their voice heard.

The issue that has arisen in relation to the lady from London Underground is not the only example. Several people have e-mailed their Member of Parliament and asked me to raise their concerns. A young woman with a masters degree cannot find a job because employers say that she has declared she has epilepsy and they are concerned that she may become a problem for the company. That has now happened 12 times, but it must not continue. We must ensure that employers, the police and hospitals—even in a hospital, someone having a seizure has been accused of being drunk and disorderly—understand people with epilepsy and recognise their condition for what it is.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

May I congratulate my hon. Friend on leading the charge in getting this debate? She will be very sadly missed in this place, where she has made a tremendous contribution. Does she agree that it is very important to understand more about the condition of epilepsy? Another area in which I take a great interest is autism, and it is estimated that 46% of children with autism also have seizures. Does she agree that we do not yet know enough about the relationship between epilepsy and other conditions, such as autism, to enable us to succeed on behalf of such people?

[Laura Sandys]

Absolutely. I totally agree. In many instances, people with epilepsy also have other chronic conditions, which are no doubt contributory factors. The level of support for research on epilepsy is significantly lower than for other conditions. Again, it is seen as a secondary or tertiary priority when it comes to research funds. It is absolutely crucial to understand the interrelationship between epilepsy and autism, as well as between epilepsy and school achievement and all sorts of not only chronic conditions but life-restricting—as well as life-enhancing—problems. I believe that we need a lot more research, but this comes down to people being clear that epilepsy matters.

[Steve Rotheram (Liverpool, Walton) (Lab)]

On that point, I have had correspondence with a hospital in my constituency called the Walton neuro centre. It says that neuropsychological care is very important, especially for younger people who, if they have access early enough, have the propensity to go on and achieve their full potential. Does the hon. Lady agree that Ministers should consider what more they can do on access to such neuropsychological assessment and care, and in supporting the work of the Walton neuro centre?

[Laura Sandys]

Absolutely. There are some wonderful, excellent centres in constituencies around the country, including in the hon. Gentleman’s constituency, but there are too few of them and there is not enough immediate referral to tertiary care once a GP identifies that epilepsy might be at the heart of a problem. We need to ensure that there is a greater understanding at the core of our health sector so that there is more referral. To be frank, we need more specialists. There is a major problem in the referral process. Epilepsy Action says that 138,000 people have been misdiagnosed. Some people are diagnosed with epilepsy who do not have it and others do not have the right medication. It is crucial to address the huge problem with referrals to tertiary care.

Following diagnosis, the cost-effective and life-enhancing pathway is to ensure that the ongoing care fits the bill. There are straightforward National Institute for Health and Care Excellence guidelines that lay out a clear pathway. There must be access to an epilepsy nurse. It would be fantastic if more GPs had epilepsy as a specialism. There must be a wrap-around package that allows people to live their lives and take control of their chronic condition. We must ensure that we have the right level of support at every single level. I am talking about people who are still potentially going to work and living their life.

We have a serious problem with SUDEP, or sudden unexpected death in epilepsy. That is an outrage. About 1,000 people every year die in their sleep. Many of them are younger people who are just moving from youth to adult services and there is not the wrap-around care that is needed. We all know from our casework that in every instance and with any condition, moving from youth services to adult care is a problem. We are seeing serious problems with those who have night-time seizures. To be frank, although people say that that is a problem, there are examples of countries in Europe that are doing better. It is crucial that we meet those targets and ensure that we do not fall behind the standards of other European countries.

I see that Mr Deputy Speaker is looking for me to wrap up. I would like to commend three sets of people, but also to challenge them. People with epilepsy live with a difficult and unpredictable condition. I take my hat off to them and to the people who care for them. However, I want them to come out and talk about epilepsy. I ask them to please ensure that their voice is heard, because if it is not, we will not get the care that we need. The charities are important, but they need to work together more. Their voices must be unified to ensure that they are heard. I call on the Government to address the Cinderella status of epilepsy. We should be doing so much better. We have criteria and there are examples, globally, of countries that are doing better. We must give people with epilepsy a lifeline to ensure that they can live a full life, and we must put the right level of investment into research to address chronic epilepsy in the long term.

[Several hon. Members]

rose—

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[Steve Baker]

I am a layman, but one of the things I have learned today is that one cannot simply cease taking medication for epilepsy, so specialist advice is required.

[Laura Sandys]

indicated assent.

[Steve Baker]

I am grateful to my hon. Friend for acknowledging that. Put simply, it seems that the epilepsy medication, which was necessary, caused psychotic side effects, which were exacerbated by anti-depressants that were prescribed with the best intentions. Jessica therefore spiralled into the situation that tragically led to her death.

I would like to finish with a few words from Jessica’s parents, who have written to me:

“The sudden and tragic death of our otherwise healthy and happy teenage daughter has caused devastation throughout our family and local community. We strongly feel that this situation could have been avoided if we were given the correct advice and prompt treatment and are committed to ensuring the same mistake does not happen to another epilepsy patient.”

Susan and Steven Monks have been robbed of their daughter and of all the future opportunities, hopes and dreams for which she stood. They deserve to know why and what will be done about it.

[Valerie Vaz (Walsall South) (Lab)]

It is a pleasure to follow the hon. Member for Wycombe (Steve Baker). I am sure I speak on behalf of all hon. Members in asking him to pass on the sympathy of the House to his constituents, whose case he has so ably put forward.

I start by paying tribute to the hon. Member for South Thanet (Laura Sandys) for her work as chair of the all-party parliamentary group on epilepsy, and for fulfilling her final task of securing this debate before leaving the House. She will be sadly missed; we shall also miss her enthusiasm and her commitment to epilepsy and to her constituents, for whom she has been an assiduous MP.

[Laura Sandys]

I am absolutely thrilled that the all-party group’s chairmanship has been handed to my hon. Friend the Member for Walsall South (Valerie Vaz), who I know will put a huge amount of passion and energy into continuing the fight and ensuring that the voice of those with epilepsy is very much heard.

[Valerie Vaz]

I am grateful to the hon. Lady. I hope to be as good as her, but I am not sure that I will be.

This is a timely debate, in that it comes between two important dates. The World Health Organisation adopted a resolution on 2 February this year, and world epilepsy day is on 26 March, when we are all urged to “colour it purple”. It is just an accident that I happen to be wearing purple today. This debate is taking place 12 days after 14 February, and most people probably know that St Valentine is the patron saint of epilepsy. The WHO launched a campaign on 9 February to improve the epilepsy treatment gap and it urged member states to look into the matter. It set out a number of clauses, and I shall mention just a few of them. Member states were urged: to ensure public awareness of and education about epilepsy; to integrate epilepsy management; and to introduce and implement national health care plans of action for epilepsy management. There are many more clauses and I urge hon. Members to look at them. A number of excellent reports have been published recently and I will touch on those in a moment.

I want to deal with three different stages of services: those for young people; the transition from young person to adult; and adult services. Here are some background facts. The brain is the most complex organ in the body with more than 100 billion neurones passing messages around it. The vast majority of the brain’s activities are subconscious. Epilepsy is a life-threatening neurological condition that can affect anybody at any age without warning. There are 40 different types of epilepsy and at least 40 different types of seizure, and 87 people are diagnosed with the condition every day. Epilepsy now accounts for more deaths than cervical cancer and is among the top 10 causes of amenable deaths.

I want to turn first to young people. The report “Improving epilepsy care for children and young people”, published by Young Epilepsy, University college London and Whittington Health highlighted unacceptable levels of misdiagnosis, inadequate communication, a variation in care and a fragmentation of services. There are 112,000 children and young people who have epilepsy, which is one in every 200. The report made seven recommendations. They include creating an individual plan for every child and young person—as one parent has said, a one-size-fits-all approach is wrong; designing a year-of-care tariff for epilepsies; and creating an audit and annual review of relevant outcomes for each child and young person. Dr Amit Bali, who was involved in producing the report, has said that only small steps have been taken in areas that require big leaps forward.

I was at the launch of Epilepsy12 at the Royal College of Paediatrics and Child Health a few years ago. A number of charities were also involved in that, including Epilepsy Action and Young Epilepsy. Epilepsy12’s report revealed variations in the level of care and available resources such as the specialist nurses and clinics that are needed to provide care across the United Kingdom. Amazingly, it also found that some services were not even meeting NICE guidelines. In a later report, published in 2014, Epilepsy12 said that some progress had been made, and that two thirds of units had specialised epilepsy nurses and more clinics were being held. However, only two in every three units reported holding a weekly epilepsy clinic just for children and young people.

The way in which young people are treated is important because it affects their education as well as their lifestyle. A three-year population-based study by Children with Epilepsy in Sussex Schools—CHESS—found that 95% of the children affected had difficulty in at least one of the assessed areas and that most of the children had several problems. The CHESS study found that 60% of the children met the diagnostic criteria for at least one behaviour or motor disorder, but only one third had previously been diagnosed. We have heard about the difficulties that children on anti-epileptic drugs have. A study by the Epilepsy Society showed that AED drugs have a detrimental impact on processing speed and memory work.

On the transition period, Epilepsy12 found that there were inadequate services and transition arrangements for young people. So more attention needs to be given to handover clinics, which could comprise both adult and paediatric health professionals. The loss of the continuity of care at transition needs to be addressed to ensure that new relationships with the clinicians are established.

Let me now discuss adults. The report by Epilepsy Action on clinical commissioning groups and commissioning in November 2014 found that only three out of 140 health and wellbeing boards are making plans for people with epilepsy. Some 78% of CCGs have not developed and do not intend to develop a written needs assessment for people with epilepsy—that must change. Evidence also shows that people with epilepsy have poor access to epilepsy specialists and epilepsy specialist nurses, and do not have regular reviews of their epilepsy. My hon. Friend the Member for Vauxhall (Kate Hoey) was kind enough to mention my ten-minute rule Bill, in which I called for direct referrals to a tertiary specialist. That has not been taken up yet, so we need to have referrals from a GP specialist to a tertiary specialist without the need to go through a generalist consultant.

The sudden unexpected death in epilepsy is an important issue, as was highlighted by SUDEP Action. The national sentinel audit of epilepsy deaths in 2002 found that 42% of such deaths were potentially avoidable. Brain surgery is another area where there is a lack of availability, with only 300 operations being carried out on adults each year. It is estimated that approximately 5,000 adults could and should benefit from the only cure there is for their epilepsy. I also wish to add my voice to those of other hon. Members on the outrage at the sacking of the young person at London Underground.

But there is hope for the future. The Epilepsy Society is undertaking active research. Its report highlighted a number of firsts, such as the first brain and tissue bank for epilepsy. It has created the first multilingual digital information resources for epilepsy, and it hopes to unravel the genetic architecture of the epilepsies and bring new hope for people with the condition. We should consider ourselves lucky in this country, because not only do we have committed practitioners who are desperate to help their patients, but we have areas where pioneering work is going on, such as that being done by Professor Cross, who has pioneered the ketogenic diet. In the US, until there was “Obamacare” those with epilepsy could not be covered by insurance because they had a pre-existing condition. We take all that for granted, which is why this debate fulfils the important role of highlighting awareness of this condition.

Hon. Members will remember the drama “The Promise”, where the lead character, Erin, not only was a heroine, but had epilepsy, which was incidental to her life: Its writer, Peter Kosminsky, lately the director of “Wolf Hall”, said that he wanted to show someone being brave and getting on with her life without letting her epilepsy circumscribe her actions, in the hope of de-stigmatising the condition. On de-stigmatising, let us also not forget the roll call of creative successful people who have or have had the condition: musicians Neil Young and Prince; and the writers Dostoevsky; Charles Dickens and Lord Byron. I hope we have today brought epilepsy out of the shadows of stigma and discrimination, and into the spotlight of knowledge, awareness and hope for the future.

--- Later in debate ---

[Laura Sandys]

I want to thank everybody here and to ask the Minister to do something for everybody, not least the two young ladies we have heard about today. Their legacy is worth his doing three things.

The first is to talk to NHS England and work out a pathway to reduce by 400 the unnecessary deaths caused by SUDEP each year. The second is to kick and beat the more than 90% of CCGs that do not have a pathway. That is not acceptable; it is absolutely letting down many people throughout the country. The third is to determine how best to implement the NICE guidelines and ensure that the pathway of long-term chronic care—

Oral Answers to Questions

Laura Sandys Excerpts

Tuesday 25th February 2014 Commons Chamber

[Dr Poulter]

Of course we need to have a health service in this country that is self-sufficient, and we have a national health service, not an international health service. However, it is right that we ensure that we look at all areas of the health service when we are applying new policies and directives, and make sure that we protect vulnerable patient groups. That is exactly what the Government are doing and we are working with the NHS to ensure that women always receive high-quality maternity care at the point of need.

[Laura Sandys (South Thanet) (Con)]

3. What progress has been made on introducing a cap on care costs.

[The Minister of State, Department of Health (Norman Lamb)]

Everyone will be protected against catastrophic costs by the insurance that the cap will provide from April 2016, in line with the Dilnot commission’s recommendations. We are currently putting the legislative framework for the cap in place, and will consult on draft regulations and guidance to implement the cap in autumn of this year.

[Laura Sandys]

Best behaviour, Mr Speaker.

Does the Minister agree that greater investment in pre-emptive and preventive measures, such as GP annual assessment for those who are getting older, might keep the new old just a little younger?

[Norman Lamb]

I start by paying tribute to my hon. Friend for the work that she has done while she has been a Member of Parliament. I know that she has announced her decision to stand down, and she has done excellent work campaigning for elderly people and others in her constituency and beyond. She is absolutely right. The cap will, first of all, help people to prepare and plan for old age, which is an incredible advance. Also, the £3.8 billion better care fund is the biggest ever shift towards preventive health care and GPs will play a critical role in that.

Epilepsy

Laura Sandys Excerpts

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey]

I was pleased to see just how much discussion there had been in the House of Commons on this issue, and it is crucial that we, as individual MPs, raise it more with our local authorities, health acute trusts, hospitals and GPs, as understanding is so important in this matter.

[Laura Sandys (South Thanet) (Con)]

rose—

[Kate Hoey]

I of course give way to the chair of the all-party group.

[Laura Sandys]

It is excellent that the hon. Lady was able to secure this debate, particularly in the light of the recent report. As an epileptic, I find that one of the issues we face is that although the condition affects half a million people there is a stigma around it, and that has stopped clinicians and society in general addressing the underlying issues we face. It is incredibly important that we have this sort of debate and ensure that we are more public about what epilepsy is if we are to give it the right level of attention.

[Kate Hoey]

I thank the hon. Lady for that. She, along with the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who unfortunately could not be here today and who has also raised this issue as an epileptic, has shown that it is very important that the public understand that people can have epilepsy and still carry on living a normal life—if being a Member of Parliament is indeed a normal life.

--- Later in debate ---

[Kate Hoey]

That is an area that I am coming to. It is extremely important. I appreciate that the Minister responding to the debate is a Health Minister, but I know he can multi-task on some occasions.

I was disappointed to learn from another parliamentary written answer that between June 2011 and July 2012 only 20 individuals in receipt of employment and support allowance—incapacity benefit—whose reported primary medical condition was epilepsy received what is called a job outcome as part of the Work programme. There are cases in which individuals with epilepsy are unable to work, but it falls upon the Government to provide unconditional support through welfare, such as employment and support allowance.

The NICE guidelines on epilepsy make it clear that epilepsy may sometimes result in significant disability, social exclusion and stigma, which many Members have mentioned, and that people with epilepsy would commonly encounter problems in employment. According to the work capability assessment handbook, the Atos working group panel on epilepsy was clear that if a person has epilepsy which occurs less than once a month, that is unlikely to impact significantly on their ability to work. I urge that consideration is given to the effects of the disorder on each individual, rather than making such a blanket ruling.

From another parliamentary question I discovered that in February 2012, 12,510 people in England with epilepsy as their primary medical condition claimed ESA, which equated to approximately 30 people in my constituency, and during the same period 32,090 people in England with epilepsy claimed either incapacity benefit or severe disability allowance, which equates to 70 people in my constituency. Finally, during the same period, 59,070 people in England with epilepsy claimed disability living allowance, which equates to approximately 100 in my constituency. There is concern that such figures are not always based on knowledge of the person and of epilepsy.

There are obviously cases where an individual who may drive as part of his job, for example, subsequently has a seizure. Under current Driver and Vehicle Licensing Agency regulations that person would be prohibited from driving for 10 years without medication. That sometimes means that he would lose his job and end up on benefit. The whole employment and support allowance system is insufficiently sympathetic in such scenarios and ends up worrying the individual with numerous mandatory schemes, sanctions and loss of benefits. It is one of the flaws in the system that needs to be dealt with to show that people are taken seriously and treated as individuals.

[Laura Sandys]

I welcome this debate, because the hon. Lady is covering a very wide spectrum of issues. She said at the beginning that a third of people with epilepsy do not have the right treatment, are not on the right medicine or have not seen the right specialist, and that is the Minister’s responsibility. Some of the other problems she mentioned, such as seizures at work and people not being on ESA or DLA, might become less prevalent if, right at the beginning of the process, we make sure that people get the right diagnosis and see the right people at the right time.

[Kate Hoey]

The hon. Lady is absolutely right. The earlier the true diagnosis is made and the person is referred to a specialist, the sooner they are seen as having an illness that can be treated and have the chance of a positive future. I am sure that everybody in the Department of Health feels like this. However, something more needs to be done at the local level among clinical groups and PCTs, and even GPs, to create this sense of understanding. The hon. Lady heard the very moving testimony from Jemma, who spoke at the launch about the difference between having a good doctor who understands and gets someone the right referral immediately and another doctor who perhaps does not understand and does not take the time to do so.

The hon. Member for Meon Valley (George Hollingbery) asked me to mention that he has a constituent who has very mild epilepsy but has not lost their job because the company they work for, Hambleside Merchandise, a business in Meon Valley, has been understanding about the situation. It is keen for the Government to change the law so that it complies with the European Union change on whether people with mild epilepsy can drive again. It was confirmed in a ministerial answer last year that these changes would happen. I ask the Minister to follow up on that to see what can happen and how quickly.

Someone in London who cannot drive because of their epilepsy may be eligible for the disabled person’s freedom pass. The Epilepsy Society, backed by other disability organisations, is campaigning for the Government to make changes to the pass in London and to the disabled person’s bus pass offered by the national Department for Transport under the English national concessionary travel scheme. In particular, the organisations call for the pass to include travel during peak hours, which is very important if someone is trying to keep a job. In some cases, a free companion pass may be necessary, as is already possible in Scotland and in Wales. If the hon. Member for Strangford (Jim Shannon) were still in his place, I would ask him whether that also applies to Northern Ireland. The Epilepsy Society also says that regional variations are confusing. People move around and it would be much better if there were an overall, agreed way of doing it.

All this comes back to a lack of awareness about information on many of these schemes. There is a lot of help and support around, but people need to be very savvy or to have a very savvy parent, or to have a link into one of the organisations that provide support, to find out all the information. Government cannot do everything, but there may be ways in which they can ensure that local authorities and others with responsibility do a little bit more. For example, people with epilepsy who get continuous anti-convulsive therapy may be eligible for the NHS medical exemption certificate. They have to fill in a form at their GP surgery to get this, and it allows them to get free prescriptions for five years. One would think that anybody in this position would automatically know about that, but it is amazing how many people do not. Perhaps GPs do not always think that they have to tell people about these things. Where it is useful to do so, we can continually raise these issues in a cross-party way within Parliament regarding our own areas.

I will conclude by thanking all the agencies and campaign groups involved for helping people with epilepsy and their carers, who do so much to help their relatives or friends. I also pay tribute to the Joint Epilepsy Council, which continues to provide information and guidance for those affected by epilepsy. Finally, before the Minister responds, I pay tribute to our own all-party group on epilepsy for the valuable work that it has undertaken over the years.

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[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. Whether it is provided by the Government or at a local level by primary care general practices, he is right to highlight the importance of much better guidance on how people can self-care. The role of expert patients can also be powerful. It can be of great value to somebody who is diagnosed with epilepsy to get guidance and support from somebody who already has the condition.

I am aware of the historical problems in this area and acknowledge that the services have not always been good enough for those living with epilepsy. Indeed, I acknowledge that the services are still not good enough in some parts of the country. There was some uncertainty, and perhaps some scepticism, over whether the coalition Government’s reforms would deliver the improvements that were so desperately sought. That was understandable, given that epilepsy has rarely found itself in the same starting position as other long-term conditions.

I am pleased to report that the Department of Health has taken a number of steps recently to improve the diagnosis and treatment of epilepsy. It will work with the NHS Commissioning Board, which takes on its full responsibilities from April, to drive further improvements for those living with the condition.

[Laura Sandys]

As the Minister rightly recognises, epilepsy has been a Cinderella condition. It has been ignored and has not received the profile that the numbers warrant. He is saying that there will be a step change in how the Department looks at the condition. Will he ensure that there is an understanding of what outputs we expect and that there are barometers to measure them, particularly given that the report states that only a third of commissioners currently put in place programmes for people with epilepsy?

[Norman Lamb]

I am very grateful to my hon. Friend. Clearly, the role of the Commissioning Board will be central in holding clinical commissioning groups to account. The register that Epilepsy Bereaved is calling for could, combined with action from the Commissioning Board, be powerful in helping us to understand more about the condition and in driving better practice.

I understand that there are no specific tests for epilepsy and that it can be difficult to diagnose. The hon. Member for Vauxhall talked about the problem of mis-diagnosis. Some people are diagnosed as having epilepsy who do not have it, and some people who have epilepsy are diagnosed as having a different condition. Such mistakes result in poor or substandard care. Increasing the awareness of the condition among health care professionals is a key factor in improving its early diagnosis and treatment. Detailed advice on epilepsy has therefore been made available on the NHS Evidence website. That is supported by the updated clinical guideline on the diagnosis and management of the condition that was published last year by the National Institute for Health and Clinical Excellence.

The treatment of long-term conditions is one of the NHS areas prioritised by the Secretary of State for Health, and it has featured prominently in the mandate to the NHS Commissioning Board and the NHS outcomes frameworks. The hon. Member for Vauxhall mentioned the awful jargon with which we all have to deal. I have my own personal war against jargon in the Department of Health, confronted with it as I am on a daily basis. As a quick aside—given that we have a bit more time than usual—we need to use language that people understand, rather than jargon that too often excludes people.

The mandate and outcomes framework set out the Government’s objectives for the NHS, and highlight the areas where we expect to see the biggest improvements. The mandate sets an objective for everyone with a long-term condition to be offered a personalised care plan by 2015 that reflects their preferences and agreed decisions. There is a legal requirement for the Commissioning Board to seek to meet the terms of the mandate, and it is potentially powerful to say that everyone with a long-term condition should have a personal care plan that they have been involved in designing and drawing up. Too often, whether for epilepsy or mental health—another area I have great interest in—people simply do not have such a plan and have never been asked for their views on their care and treatment. If we can effect the transition so that everyone with a long-term condition benefits from it, we can make a real difference. Epilepsy Action and other voluntary sector organisations have been requesting such a plan for some time now, and it should be seen as a positive step.

The NHS Commissioning Board has responded to the mandate and the outcomes framework by incorporating long-term conditions into the structure of the organisation with

“enhancing the quality of life for people with long-term conditions”

as one of its five areas of focus. Strong national leadership for epilepsy services has been raised time and again in the House, and I am pleased to announce that, as part of this work, the NHS Commissioning Board is appointing a national clinical director for chronic disability. They will not deal specifically with epilepsy, but having such a director for chronic disability, including epilepsy, is a positive step.

The NHS Commissioning Board is setting up four strategic clinical networks, which is important. We have seen the benefit of such networks with cancer, and those benefits are now being spread to other areas, including neurological disorders. The networks bring together groups of health professionals to improve services for neurological disorders and other specific conditions. They will receive an investment of £42 million and play an important part in driving up quality and consistency in treating those conditions. If everyone within the service is linked into expert networks, the chances of improving treatment on the ground become greater. Health and well-being boards will play an important role in driving up standards locally, given their role in agreeing local priorities and influencing commissioning decisions.

This year will see the publication by NICE of new quality standards for children and adults with epilepsy—that has been called for repeatedly in this House. Those quality standards, which are expected to be published in February and March, will help clinicians make informed decisions about referrals, tests and ongoing care, and ensure a more consistent application of NICE guidelines in that area.

The Department also understands the importance of providing the best possible information to people with epilepsy and promoting better self-care—the point correctly raised by my hon. Friend the Member for Beckenham (Bob Stewart). GPs have an important role to play in that, and in ensuring that those living with epilepsy have their condition kept under control with correct medication. Ultimately, however, responsibility for self-care lies not with health professionals, but with patients. Through NHS Choices, the expert patients programme, and support from health professionals and voluntary sector groups, people with epilepsy can receive the information they need to stay safe and independent, and to manage their condition on a day-to-day basis.

On the wider Government response, the hon. Member for Vauxhall referred to the role of education and schools. I understand that the Department for Education is working to support children and young people with epilepsy, as some are not reaching their full potential in school and further education. For example, the Department has issued guidance to schools on how best to manage medicines for pupils diagnosed with epilepsy and other conditions. For those pupils who cannot attend school because of their condition, the Department has provided guidance on what alternative provision should be made.

In addition, the forthcoming children and families Bill will introduce a duty on local authorities and clinical commissioning groups to commission services jointly—a much more integrated approach than we had in the past—to meet the needs of young people with special educational needs and disability, including those with epilepsy. The Bill will introduce a streamlined, single assessment for the young person. It will also inform an education, health and care plan for the individual. The plan will enable families and young people to buy services through direct payments—we are putting the individuals in charge and giving them real power—thus extending their choice and control. That approach is currently being piloted across 20 pathfinder sites. I understand that the lessons learned will inform the development of secondary legislation and codes of practice, and help with implementation.

For many adults with epilepsy, employment is a major quality-of-life issue—the hon. Lady rightly raised the importance of employment. Studies have shown that people with epilepsy are up to twice as likely as people without the condition to be at risk of unemployment or under-employment relative to their skills and experience. The Department for Work and Pensions has confirmed that, although it does not target employment programmes exclusively at individuals with particular conditions, its programmes, including specialist disability employment programmes, aim to identify and meet the needs of the individual, including those with epilepsy.

The Department for Work and Pensions also recognises the important role that cash benefits can play in supporting people with a disability or long-term condition to remain independent. Entitlement to disability living allowance, and to its planned replacement, the personal independence payment, is not based on a specific health condition. However, my understanding is that people with epilepsy may be eligible for support, depending on the severity of their condition. The hon. Lady mentioned the Atos-conducted work capability assessments and made the legitimate point that they should concentrate on the individual. We can have guidelines to help to steer assessors, but the individual’s needs should be properly and fully assessed. That is outside my departmental responsibilities, so I will refer her remarks to the right place.

The Department for Work and Pensions has advised that, throughout the development of the new personal independence payments policy, it has engaged and consulted with a wide range of disability organisations. That includes a discussion with Epilepsy Action on the assessment criteria for the new policy. For those who face barriers to work because of their condition, financial support may also be available under the employment and support allowance—that, too, is subject to eligibility.

I should refer to some of the hon. Lady’s specific questions—I will ensure I give her a full reply later. She mentioned bus passes. I understand that some local authorities in England have implemented their own bus pass concessions and extended the hours of free travel to include peak times, but the majority have not. Ultimately this has to be a matter for local decision making. I recognise that such variations are not ideal, but the local authority has the power to do this, and pressure can be put on the local authority in any particular area to do what others have already done.

I was slightly confused because the hon. Lady referred to both the National Audit Office and the Audit Commission. The point is that we should focus on the important issue. She argued the case for some sort of inquiry into epilepsy care to see where we can improve its quality. The right approach is probably through the work that NICE is doing. If we can establish what good care looks like, we can encourage all clinical commissioning groups to seek to deliver that quality of care.

The hon. Lady also talked about outcome indicators, and I will look at that and come back to her. We need to try to understand the jargon, but the important point is that we should, as far as possible, be seeking to focus on the results for individuals. Too often in the past we have focused on processes and not enough on what we seek to achieve through health care. If we can, through the outcomes framework, identify things that we are seeking to achieve for patients—improving their quality of life—and that can then drive the system, that would be a good thing. We will look specifically at that.

The hon. Lady talked about the constitution and the right of involvement. We have been updating the constitution and putting patients’ rights much more centre stage—focusing on the personal rather than a more paternalistic approach. That is the right approach, and through the combination of what the constitution will say with what the mandate will require of the NHS in providing the personalised care plan—with the involvement of the individual and based on their priorities, not just presented to them—we can make real progress in putting the patient centre stage.

The hon. Lady talked about the lack of engagement of CCGs. That point has been heard, and it is good that she has had this opportunity to make the point. The Commissioning Board will do what it can to ensure that the quality of care is improved at local level, and it will be the board’s responsibility to engage with CCGs on that.

The hon. Lady also mentioned children and the fact that they are not achieving their full potential. I think that I have addressed that point already, but I will come back to her if I have missed anything. She and others referred to the absolute importance of a speedy referral from GP to specialist, and the hon. Member for Walsall South (Valerie Vaz) also mentioned the action plan for children in schools. She is right to raise both those issues, which were addressed in her ten-minute rule Bill.

I hope that I have addressed the key issues that were raised in the debate and I apologise if I have missed any. I thank the hon. Member for Vauxhall for introducing this debate, which has given me an important opportunity to highlight some key concerns, as well as the fact that much work remains to be done to improve the quality of care across the country. The Government are working to support people with epilepsy and to keep those living with the condition as safe and independent as possible.

Question put and agreed to.

Social Care (Local Sufficiency) and Identification of Carers Bill

Laura Sandys Excerpts

Friday 7th September 2012 Commons Chamber

[Laura Sandys (South Thanet) (Con)]

It gives me great pleasure to follow the hon. Member for Aberavon (Dr Francis), in particular because of his history; he has been involved in the carers agenda for many years. I am pleased to be a sponsor of the Bill. The hon. Member for Worsley and Eccles South (Barbara Keeley), who introduced it, has a huge track record on social care and carers.

The issue of carers not only impacts the constituents of every Member of Parliament; there is probably not one MP who does not have a friend, a friend of a friend, a cousin or other family member who is caring or very close to somebody who is. Carers permeate every part of society, and every socio-economic and age group. For that reason, it is crucial that carers legislation and policy are taken extremely seriously.

I am pleased that the Government have taken the initiative to develop a White Paper that, for the first time in many years, deals with the gritty, extremely complicated—it does not lack pain—policy on long-term social care. We are facing a big problem in this country and globally. Carers are very much at the heart of how the policy needs to develop and evolve. In many ways, they are front-line troops.

The legislation and media coverage is all about care homes—the scandals involve the institutional support for people who are not well—but the important thing is what happens behind closed doors, and we need to address the quantity of people who need care and support. Those people are in some ways hidden from the system. They are invisible to the authorities, but they need both recognition—they need to know that we know and respect them—and practical support. We need policies to ensure that they are given the support they need and deserve because of the sacrifice that they are making.

Support for carers is a crucial long-term health care policy, but it hit me personally and changed my life. I was 17 when my father had a massive stroke and it changed our life dramatically. I was going to go to university, but I went out to work as a dispatch rider. My mother’s life changed dramatically. I did not go to university—I helped her to care for my father. Over the five-year period that it took for my father ultimately to die, my mother probably aged by about 15 years. That is the example of my life, but those things are happening around the country. People who are frail and have health problems find the moral responsibility of caring both physically and sometimes financially extremely difficult.

My experience changed my life and certainly my education, but it also taught me of the extraordinary self-sacrifice around the country. The issue of young carers is very important. I have done a lot of work in my constituency with them. The Bill needs to ensure that local authorities and all institutions around young people look to identify those who take responsibilities way beyond their years. I go regularly to a young carers group. The young children in the group look and behave as though they are older than their age. That is fantastic—they are maturing and taking extraordinary responsibilities—but caring changes how they grow up, including their access to a social life. They age before their time.

I make the situation clear to my local schools, but I am very lucky because they have taken a lot of personal responsibility to identify those young people. I appreciate, however, having listened to other Members, that some schools and even some people in social services do not understand the dynamic of these households and the additional responsibilities being put on these children.

Identification is extremely important for another slightly more controversial reason. A teacher in my area said to me, “Although the parents of some of these children have been ill, they are no longer ill but have become dependent on the child delivering care services to them.” There are all sorts of issues within this pathway of being a young carer that need to be identified so that support can be provided. We need to ensure that schools, social services and the institutions around these young people understand the issues, and we need to ensure that clear action is taken to alleviate the situation of children providing support to parents who have entered into this relationship of dependency.

[Dr Francis]

The hon. Lady talks about lessons and is making a powerful case, but however much we sympathise with carers, surely the real lesson is that there is no substitute for legislation.

--- Later in debate ---

[Laura Sandys]

Legislation is important and is part of what the Government are doing to get a grip on the situation. The forthcoming social care Bill is extremely welcome and it is important that these measures be considered and incorporated in it. I do not question the importance of legislation.

Humanity is also important, however, and that is about education, understanding and people being able to identify the problems in front of them. On the long-term care issue, let us consider the system operating in Torbay. That did not need legislation. It needed common sense and an understanding of how to integrate the provision of care. It needed agencies to talk to each other and to think about how to deliver service to individuals and families, rather than thinking of themselves as institutions.

[Diana Johnson]

I am listening carefully to what the hon. Lady says. She points to examples of good practice, but those often require a champion who sees young carers as an important issue that needs to be addressed. Unfortunately, however, not all head teachers, heads of colleges or vice-chancellors take the same view about young carers or student carers, so having legislation to underpin what is required of those institutions is important, as too are champions.

[Laura Sandys]

I do not dispute the need to ensure that everybody within these institutions has a responsibility towards carers. There is no question about that. They also have responsibility for the welfare of children. They have to understand that this is bigger than just the responsibility of carers. It also involves attainment at school and young people’s mental health. It is interesting and a bit concerning that some teachers do not even know that there is such a thing as a child carer. I find that remarkable, but solving that problem does not require legislation; it requires the education of the educators. This private Member’s Bill is part of the way to ensure that we start to normalise what is required from these organisations and institutions.

We have an opportunity here. Perhaps we, as the Bill’s sponsors, should be making representations to the Select Committee on Health, which will be doing the pre-legislative scrutiny of the forthcoming social care Bill. We should ensure that the Committee appreciates the importance of the measures in the private Member’s Bill and puts in its report provisions to ensure that the Government respond not only to this debate and the private Member’s Bill but to the Select Committee’s report.

There is also an opportunity, in this legislation and the wider general practice of local authorities, in respect of the health and wellbeing boards. Health and wellbeing boards and the doctors’ commissioning units need to be focused not just on the patient who walks in the door but on the person looking after that patient. I am sure that many of us in the Chamber—and, I hope, beyond—always, as I do, say to the doctor, “You look at the patient, but do you always ask, ‘How is the carer? How well is that carer?’” Sometimes the carer will be less well than the so-called patient, but they will not present to doctors. It is crucial that doctors take the initiative and understand that if the carer ends up in hospital, we end up with two people in crisis, not just one. I would welcome clear statements from the Secretary of State and the Minister that GP commissioning and what I call practices of humanity need to be drilled through the health service in order to address these problems, which will present themselves and which will cost everybody in money and suffering.

I am very supportive of the provisions in the Bill, and I urge the Government to consider them as part of their overall legislation. The hon. Member for Worsley and Eccles South is a member of the Health Committee and I am sure she will be a great advocate, but it would be useful if proponents of this legislation were also to put in a submission to the Committee. I hope that this Bill will be encapsulated in the forthcoming Government Bill.

--- Later in debate ---

[Norman Lamb]

There is a degree of overlap on the sufficiency issue. I commit to discussing with the hon. Lady whether we have the framework right in the Government draft Bill or whether it could be improved—let us have that discussion. I will seek to address in my remarks the interesting philosophical argument about how best to approach identification, but parts of her Bill go beyond the responsibilities of my Department. To be clear, I am happy to engage with other Ministers to seek to address some of the issues she raises and I will maintain a dialogue with her on that.

[Laura Sandys]

In response to the point made by the hon. Member for Worsley and Eccles South (Barbara Keeley), is there not also an opportunity to create a strong role for the health and wellbeing boards?

[Norman Lamb]

I am grateful to my hon. Friend for raising that point. Yes, absolutely, there is and I will come back to that. One concern I have is the focus in the Bill on social care, whereas the thrust of Government policy is the importance of integrated care. My hon. Friend and the shadow Minister referred to Torbay. I am passionate about that approach. We can do an awful lot more. The whole approach should be to integrate health and social care in our planning and our execution, rather than, as the Bills risks, silo-ing social care and assessments of social care and carers’ needs separately.

The shadow Minister commented on budgets. I absolutely understand that budgets are tight and that local authorities are in difficult times, but the new budget survey from the Association of Directors of Adult Social Services shows not huge cuts but that councils have risen rather impressively to the challenge and identified savings of £1.89 billion since 2010-11 by using resources more efficiently. Surveys show that councils’ spending on adult social care is due to fall by only £200 million or so. If the money can be used much more effectively, we can ensure that services are protected.

One thing I am interested in pursuing in my new role is how well we commission care. There is disturbing evidence of a race to the bottom, with care being commissioned on the basis of an hourly rate and the cheapest getting the contract. We need to do everything we can to ensure that commissioning provides incentives to improve health and well-being, prolong independence and improve mobility, thereby saving money and improving care, which is what we need to achieve. There is probably a widespread view that we do not commission care nearly effectively enough. There must be a substantial improvement in our expenditure on social care.

We agree with much of the intention of the Bill, but for a number of reasons we cannot support it. First, it would perpetuate the fragmentation of carers legislation, which we are seeking to end. My hon. Friend the Member for Bury North made the point that the Law Commission argued for a single statute. It seems irrational, at the very moment that the whole sector is celebrating the fact that we are seeking to bring everything together, to have a separate Bill introducing new duties. The debate about getting the framework right—putting everything together in one clear framework, written in plain English—needs to be part of the Government’s Bill.

Oral Answers to Questions

Laura Sandys Excerpts

Tuesday 17th July 2012 Commons Chamber

[Andrew Selous (South West Bedfordshire) (Con)]

4. What steps he is taking to improve the quality of care provided in residential and nursing homes.

[Laura Sandys (South Thanet) (Con)]

9. What steps he is taking to improve social care services.

[The Minister of State, Department of Health (Paul Burstow)]

The White Paper introduces new measures to help us to deliver better quality services and to improve the care that people experience, including through greater transparency, with new provider quality profiles and new care audits. It also clarifies what quality in care and support means, by setting out principles, standards, roles and responsibilities for driving up the quality of care. The White Paper makes it clear that we will rule out crude commissioning by the minute, which turns care workers into clock-watchers, and that we will work with commissioners, care providers and people who use services and carers in order to bring to an end commissioning practices that undermine people’s dignity and choice.

[Paul Burstow]

I am grateful for that question. Indeed, one of the issues set out in the White Paper is the collaboration by the Department of Health and others with leaders in the care sector to make sure that care homes become much more embedded as part of their local communities and much more genuinely open to their local communities—working with local schools and working with HealthWatch, which will have powers of entry to work with those care homes as well. By turning the spotlight on in a benign way, making sure that all care homes are more open to their public, I think we can significantly improve quality.

[Laura Sandys]

In parallel with the social care budget, do the Government see a strong role for GPs to look at prevention—putting in special monitoring as people get older to ensure that we stay younger and fitter for longer?

--- Later in debate ---

[Anne Milton]

I assure the hon. Lady that all must have regard to the NHS constitution. In fact, we issued guidance to NHS organisations that all contracts of employment should cover whistleblowing rights. In September 2010, we amended terms and conditions of service and guidance to the NHS on supporting and taking action on concerns raised by staff. The changes made to the NHS constitution make very clear the rights and responsibilities of NHS staff and their employers in respect of whistleblowing. As I have pointed out, all those providing services on behalf of the NHS must have due regard to the NHS constitution.

[Laura Sandys (South Thanet) (Con)]

T1. If he will make a statement on his departmental responsibilities.

[The Secretary of State for Health (Mr Andrew Lansley)]

My responsibility is to lead the NHS in delivering improved health outcomes in England, to lead a public health service that improves the health of the nation and reduces health inequalities, and to lead the reform of adult social care, which supports and protects vulnerable people.

[Laura Sandys]

I thank the Secretary of State for that answer. Two of my local dentists have been closed as a result of an Office of Fair Trading investigation. Although that is totally understandable and nothing to do with the NHS, will the Secretary of State confirm to my constituents that they will have access to NHS-funded dentists? There happen to be more NHS-funded dentists in this country now than there were under the previous Government.

[Mr Lansley]

I think I can give my hon. Friend that reassurance. We are committed to increasing access to NHS dentistry, and over 1.1 million more patients have been seen by an NHS dentist since May 2010 than before the election. Nationally, there are more dentists. In 2010-11, there were 22,799 compared with 22,003 in the preceding year, before the election. NHS Kent and Medway has confirmed that it will have six dentists in place from 1 September 2012 who will temporarily provide the treatment that she is looking for, and it has started tendering processes to commission permanent NHS dental services in her area.

Care and Support

Laura Sandys Excerpts

Wednesday 11th July 2012 Commons Chamber

[Mr Lansley]

From the care user’s point of view, it will be funded by local authorities. Central Government will back that up.

[Laura Sandys (South Thanet) (Con)]

The residents of Thanet will be reassured by the paper, particular when it comes to caring by the minute, which shows so little respect and dignity for the elderly. However, I urge the Secretary of State to look at the culture of social care, in which funds go more to crisis management than to prevention. I urge him to understand that we could introduce many new measures that will keep people healthy as they get older rather than ambulance-chase after a crisis.

[Mr Lansley]

I agree with my hon. Friend. That is why we want the focus to be on maintaining well-being and independence. More specialist housing will help with that. The doubling this year compared with last year of resources from the NHS to support re-ablement—when people are discharged from hospital after, for example, a fall and a hip fracture—will directly enable people to be more independent. A lot of the resources that the NHS is putting in with social care is directed towards that kind of preventive work rather than to crisis response. I hope we can do more of that in future.

Adult Social Care

Laura Sandys Excerpts

Thursday 8th March 2012 Commons Chamber

[Laura Sandys (South Thanet) (Con)]

Of course money is important, but is this really just about money? Is it not really about how we believe the service needs to be delivered? We need to ensure that people are kept out of care, not in care. Until we re-engineer what we are delivering, we will not be able to consider the funding mechanisms. If we just fund what we currently have, we will be funding something that is broken.

[Kelvin Hopkins]

I thank the hon. Lady for her intervention, but I think that the system is broken because it is underfunded and we have forged ahead with privatisation. In my constituency, we had a wonderful care home, which I knew well because my mother-in-law lived there in the last few years of her life. She and the other residents loved being there. They had permanent, dedicated staff, all from the local community, who loved working there. All the health advisers and professionals who came into the home thought that it was wonderful. It was closed. The pretext for that was that it did not meet care home standards because it did not have en-suite facilities. It was a trick—a pretext for closing homes and forcing them into the private sector. That home was closed, the land was sold and all the residents went into private care, some of which was not very good.

--- Later in debate ---

[Laura Sandys (South Thanet) (Con)]

It is a great pleasure to follow my hon. Friend the Member for Congleton (Fiona Bruce).

My hon. Friend the Member for Truro and Falmouth (Sarah Newton) has been very important in instigating this debate about future policy on long-term care and ensuring that other such discussions are going on around the House. If it is the case that we come into Parliament because of certain issues, then reviewing and reforming long-term care would be one of the reasons that I find myself in this place. I am not sure that anything is more important for Government, Opposition and this House to resolve, and I give a huge amount of support to the cross-party debate that is going on.

However, we must realise that, unlike in other parts of NHS reform, there is not one person in the country who does not have a view on this subject and does not understand what long-term care means to them. They will look at it, and present it, through the prism of their parents or elderly relatives, and in their heart they will be thinking, “That is what my future will look like.” The shadow Secretary of State said that this debate needs to go beyond this House and to engage the public. I welcome that comment. As my hon. Friend the Member for Kingswood (Chris Skidmore) said, this is about a contract. We are entering into a discussion that will end up as a settlement between the country—the hon. Member for Luton North (Kelvin Hopkins) thinks that a little more funding might be needed—and the public, whose responsibility meets that of the state halfway, or perhaps more.

The public know that the system is broken. Its funding has been squeezed and there has been very little reform or innovation—other than in Torbay, which as we all know is the place to move to as one gets older. When people talk about care packages, it sometimes seems as though the patient is the package and it is hard to understand where the care kicks in. I believe that Dilnot has produced something useful and important, but perhaps it is a little pre-emptive. Until we can be explicit about what this care looks like and feels like, and what people’s experiences of it will be, it is difficult to talk to people about how we expect them to pay for it. I do not believe that the public are prepared to fund the current system, so we must first look at changing it.

I have been a carer myself. I cared for my father when he had a stroke when I was 17, and I saw my mother age by 15 years over a five-year period of caring for him. I have seen it first hand, and I understand some of the key issues that people face. I have also worked professionally in the areas of incontinence—not a charming subject, but one that is exceptionally important in this respect— epilepsy and motor neurone disease, so I have seen this from the end user’s perspective.

What could the new system look like? I believe that the system should be re-engineered around the principle of early intervention. The deceleration of the impact of ageing could be achieved by co-ordinating non-clinical services to keep people fitter and out of the care system. The things that social care delivers must change; it needs a total refit. I believe that that could be guided by four key principles. The first is about keeping the new old young. The second is about keeping people out of care, rather than talking about funding them in care. The third is about caring for carers; we need a whole stream of wraparound policy to support those people who are making that ultimate sacrifice—well, not the ultimate sacrifice, but a significant one. The fourth is about the need for top-quality care for those who do end up in residential care.

I hope that we will be able to keep the new old young. Members will be thrilled to hear that most of us have already started the process of ageing. Everything that we do now will have an impact on us in our 60s and 70s, and beyond. Why are we not introducing, through our GPs, human MOTs to look at any challenges to mobility? Owing to distributing far too many leaflets, both my arches have collapsed and I now have insoles in my shoes. That could have become a major problem as I got older. Why are we not looking at people in their 40s and 50s and taking steps to intervene and decelerate the ageing process?

[John Pugh]

Does the hon. Lady not recognise that delivering leaflets is one of the finest ways of keeping the old young?

[Laura Sandys]

I totally agree.

The acceleration of ageing starts to happen before we get old, and we must look at the public health opportunities to engage with and pre-empt some of the issues that we might face as we get older. That leads me on to keeping people out of care. The three biggest reasons for people going into care are dementia, incontinence and accidents, such as falls. Are we looking at those three factors in enough detail? This morning, on the radio, we heard about a drug that could help people to stay more able despite their dementia, and I hope that it will become more widely available.

I said earlier that I had worked in the area of incontinence. It is one of the most easily managed conditions, so why is it not properly supported? Why are so many people referring their family members to residential care for that reason, when the condition can be addressed easily and extremely cheaply? We are not addressing the condition, and we need to look at it in a lot more detail to ensure that more people can keep their relatives at home. I also mentioned falls. Why do we wait until someone breaks their pelvis before going into their house to see whether they have a handrail, whether their lights are working or whether the ramp is in the right place? None of this is rocket science, folks. It is perfectly straightforward, and I do not understand why such interventions are not being made much earlier.

We have a system that is broken, but we are not doing the necessary pre-emptive work. Instead, the system rewards acute services. It finds installing handrails or wet-rooms less thrilling than ambulances and broken hips. That makes no financial sense, and no human sense. The public know where the system is going wrong, and they can see that earlier intervention would make a difference to their loved ones. Many people have spoken about carers today, and we need to do as much as possible for them. They are at the heart of keeping people out of the care sector.

If we re-engineer our care system, making prevention and pre-emption the gold standard, we must look at a re-engineered funding mechanism, too. I believe that there is a policy framework that is a little like the green deal: for those who support people out of care, there is a bonus and an incentive, rather than the current financial model that rewards hospitalisation and pays far too little for those in home support.

I welcome the comments of hon. Members about how little care workers in homes are paid. My word, if we look at the value we get from that particular care intervention in comparison with extreme nurses in hospitals, we should start to understand that we have a very unbalanced system.

In conclusion, if we have a vision for decent and dignified care, the public will enter into a contract with the Government. They might even do so more than the Government think; they might even pay more than we are currently asking them to contribute. However, they will do that only if they see a re-engineered system that places the foremost priority on delivering care—quality care—that they can trust, rely on and understand.

Epilepsy Services

Laura Sandys Excerpts

Tuesday 12th October 2010 Westminster Hall

[Laura Sandys (South Thanet) (Con)]

I thank my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for securing the debate, as it is important that the matter is brought to the fore. I am lucky and privileged to be the chairman of the all-party group on epilepsy, and I am pleased that we are joined today by many young epileptic people who are taking their education forward and have a bright future ahead of them. We must ensure that we give them the same future in employment that we give other young people, and that future is about controlling a chronic condition.

Like my hon. Friend, I am epileptic, though I am lucky to have had very few seizures—I have had five in my life and no incident in the past seven years. There is a wide range of conditions—40, as my hon. Friend mentioned. Some people, like me, sometimes forget that they are epileptic, while others have seizures regularly, sometimes daily. The issue we all share is stigma. As soon as one mentions the word “epilepsy”, all sorts of extraordinary ideas come into people’s minds, and there can be an assumption that we might need constant attention.

Children with epilepsy have a particularly difficult time in school, because even if they do not have any seizures they can be wrapped in cotton wool and stopped from participating in outdoor sports. A child with epilepsy of course needs attention, and my hon. Friend is right that nurses and teachers need to understand that seizures might occur, but we must start to relax about this. We must focus on epilepsy from a medical point of view, but we must not stop young people participating and being part of a life when, with proper diagnosis and the right medication, they can make an important contribution in school and in employment.

I do not know whether other hon. Members know this, but my hon. Friend and I, as epileptics, are not allowed to walk up the stairs to the top of Big Ben. There are many things that we cannot do, such as recreational diving; epileptics cannot go diving unless they have been seizure free for five years and have not been taking medication for that time. I would have thought that it was probably quite useful to take medication, and I have done quite a bit of scuba diving without knowing about those regulations. We are creating barriers because we do not understand the variations in epilepsy. There is extreme epilepsy, mild epilepsy and seizure-free epilepsy, and we have an opportunity to ensure that more people are seizure free and making a contribution to society. I would like the Minister to join us, with the Joint Epilepsy Council, to ensure that we start to make the authorities, teachers and the medical profession understand more about the variations and the opportunities available to people with epilepsy who have been properly diagnosed and are properly medicated.

My chairmanship of the all-party group on epilepsy is concerned with stigma and with those who have severe epilepsy, but also with liberation for those who have controlled epilepsy. When I became chairman, I was contacted immediately by a local GP, who happens to be one of the best in the country specialising in epilepsy. Over the past five years, with seven GPs specialising in epilepsy, we have reduced related A and E admissions in South Thanet by 60%. That is most certainly a cost saving, but also a life liberator. We are reducing seizures for patients across the area, and I would like the Minister to look at what we have done. Patients are getting that primary attention and are not having to wait for months for appointments with consultants. They have ongoing care with specialist nurses.

What we have achieved in South Thanet is a model that could be rolled out over many other specialisms, where GPs who are passionate about a subject can make the difference and ensure that we have a more effective and responsive service. Hopefully we will reach the target for epilepsy, which is for 72% of sufferers to be seizure free. I would welcome the opportunity to meet the Minister and to discuss our services in South Thanet further.