Epilepsy

Nia Griffith Excerpts

Tuesday 29th November 2011 Westminster Hall

[Steve McCabe]

I certainly congratulate the family on that fundraising, and the point about lack of information on epilepsy is crucial. The full title of the debate is “Prevention of avoidable deaths from epilepsy”, but given the nature of the subject I may occasionally stray into more general territory; I hope that you will forgive me for doing so, Mr Scott.

Epilepsy is defined as a tendency to have recurrent seizures, when a sudden burst of excess electrical activity in the brain causes a temporary disruption in the normal message-passing between brain cells. Epilepsy is not one condition but a composite of about 40 different types of seizures and up to 50 different syndromes. It affects about 600,000 people in the UK, which is one in every 103 people or about 930 people in each parliamentary constituency. It is estimated that about 69,000 people with epilepsy could have their seizures controlled with good treatment; about 74,000 people are taking aggressive drugs unnecessarily, because of misdiagnosis; a quarter of people who are known to learning disability services have epilepsy; half of the 60,000 young people with epilepsy are estimated to be underachieving academically relative to their intellectual capacity; and people with epilepsy have been shown to be twice as likely as those without epilepsy to be at risk of being unemployed.

Some studies suggest that the likelihood of early death in people with epilepsy is two or three times higher than in people without epilepsy. As my hon. Friend the Member for Coventry South (Mr Cunningham) indicated, the biggest risk appears to be poor seizure control, with the risk of early death increasing as the number of seizures that an individual suffers increases. A phenomenon that people are now starting to come to terms with is sudden unexpected death in epilepsy, or SUDEP. I understand that in 2009 about 1,150 people in the UK died of epilepsy-related causes. That means that, each day in the UK, approximately three people with epilepsy die, and at least a third of those deaths—one death each day—are potentially avoidable.

I am very grateful to Lucy Kinton, a consultant neurologist at Basingstoke and North Hampshire NHS Foundation Trust, who says that there is not enough research into SUDEP, which frequently affects young people who otherwise could be expected to have a fairly normal life. Indeed, she points out that our investment in research into epilepsy is much lower than our investment in research into other frequently occurring conditions, such as diabetes.

[Nia Griffith (Llanelli) (Lab)]

As a child, I lived on what was called an epilepsy centre—my mother was the resident doctor there—in the middle of the countryside. Does my hon. Friend agree that although we have made huge progress since those days in terms of changing social attitudes and raising awareness, research into epilepsy is still very much underfunded? Is there not a huge need to make research into epilepsy an urgent priority, so that we can gain some of the knowledge that could prevent some of the future deaths from epilepsy?

[Steve McCabe]

I certainly agree that there have been considerable strides and we should not dismiss them, but there is an overwhelming need for further research and for improvements in specialist care and treatment. That is one of the points that I hope the Minister will comment on later this morning.

SUDEP accounts for nearly half of all epilepsy-related deaths. Research suggests that the seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing, very occasionally causing the person to stop breathing completely. The single most important risk factor appears to be uncontrolled generalised tonic-clonic seizures, which, I understand, are the type of seizure that causes a person to lose consciousness, while their body becomes stiff and then starts to jerk. Such seizures can lead to sudden unexpected death.

It is estimated that there are about 500 cases of SUDEP every year, and a further 500 deaths every year due to other epilepsy-related causes. About 39% of adult deaths from epilepsy were considered to be potentially or probably avoidable. The main problems or deficiencies that cause these deaths include inadequate drug management; lack of appropriate investigations; inadequate recording of patients’ histories; adults with learning disabilities being lost in the transfer from child services to adult services; and one or more major clinical management errors being made. The absence of evidence of a package of care for those suffering from epilepsy is also a cause of rising concern. In primary care management, the main problems identified include sparse evidence of structured management plans, missed triggers for referral and professional communication failures.

For women with epilepsy, the risk of sudden death in pregnancy remains higher for those with other long-term conditions. The risk of maternal death is an estimated 10 times higher for women with epilepsy than for women in the general population. It is probably fair to say, however, that the risk is still low overall.

I am very grateful to Young Epilepsy, formerly known as the National Centre for Young People with Epilepsy, which works on behalf of about 112,000 children with epilepsy.

Contaminated Blood and Blood Products

Nia Griffith Excerpts

Thursday 14th October 2010 Commons Chamber

[Mr Clarke]

I am grateful for my hon. Friend’s intervention.

The kind of information that we have—and we have had interventions year after year—in terms of giving us the facts and the evidence, quite apart from what our constituents are drawing to our attention, was embraced in Lord Archer’s report, to which the motion refers. That report, which I very much welcome, led to Lord Morris of Manchester—both our noble Friends have done a commendable job in bringing these issues to our attention—attempting to deal with the problem through legislation. A Bill came to this House at the beginning of this year, but where did it go? Nowhere.

That brings me to what this issue means for our constituents. I spoke yesterday to a man in my constituency—I will not name him—who is now 36. He described the bizarre experiences of his case. He talked about the secrecy surrounding these matters. The excellent Yorkhill hospital in Glasgow has a very good reputation, but a large number of papers pertaining to it have simply gone missing. My constituent talked about the stigma of having hepatitis C; he had been told for many years that he did not have hepatitis A or B, and was lucky not to have AIDS. His doctor withheld information on his particular case for more than a year. He told me only yesterday what the real problems were—for example, the difficulty of getting life insurance and a mortgage for himself and his partner.

[Nia Griffith (Llanelli) (Lab)]

Will my right hon. Friend give way?

[Mr Clarke]

I am sorry, I do not have time.

My constituent also talked about the increased premium he faced in getting travel insurance. People are clearly being penalised again and again because they had the misfortune to find themselves with this condition of haemophilia and then found, as they approached the national health service, that their condition was made unacceptably worse.

I want to thank the organisations that have helped. With particular reference to Scotland, I want to thank Mr Philip Nolan, who spent several hours with my constituent and me, and who, it seems to me, has been in London almost every week for years, preaching to us the necessity to act.

My constituent referred yesterday to the position in Northern Ireland. I do not want to open up yet another party political debate, but the truth of the matter is that even with its economic difficulties, Ireland—if I said Northern Ireland yesterday, I should have said Ireland—has not abandoned its scheme.

--- Later in debate ---

[Jenny Willott]

Indeed, and I was just coming to that point. As Members will be aware, the previous Government lost a judicial review in April when Lord Archer’s recommendations for increasing compensation in line with payments in Ireland seemed to be rejected out of hand. My concern is that today’s statement appears to do something similar, so I am somewhat disappointed at the wording of it.

[Nia Griffith]

Will the hon. Lady give way?

[Jenny Willott]

I will, but for the final time.

[Nia Griffith]

I commend the hon. Lady for the excellent work she has done, including the Adjournment debate that she mentioned, which I too attended. I also commend her for lobbying Ministers. Does she agree that what she really wants is some firm commitment from the Government Front-Bench team—something concrete that she can go home with, rather than having to push things back again and again, as has happened in the past?

[Jenny Willott]

The fact that we have a deadline of Christmas for the report is very helpful. That is not too far away, and a concrete date has been specified. I hope that the Minister will ensure that we get the response by that time, and that if given the chance later, she will speak further on that subject.

The time that this process is taking is clearly a major issue. Given that it has taken more than 20 years even to hold an inquiry, the least the victims deserve is for the recommendations to be considered seriously, even those that would be expensive to implement. Lord Archer made a number of sensible and important recommendations, and although many have been implemented, a number still need to be acted on. Some would be expensive to implement, but others would not. Improved compensation is clearly the most controversial, and I appreciate that in the current financial climate the Government will find it hard to deal with, but, as was pointed out by my hon. Friend the Member for West Aberdeenshire and Kincardine (Sir Robert Smith), other issues, too, have not been considered properly so far. For instance, patients with hepatitis C are treated differently from, and worse than, those with HIV. That simply is not fair. The widows of those who died before August 2003 receive nothing, and that is not fair either. Those who are infected cannot obtain insurance, which has massive implications for their lives.

Supporting Carers

Nia Griffith Excerpts

Thursday 1st July 2010 Westminster Hall

[Nia Griffith (Llanelli) (Lab)]

I will try not to repeat things mentioned by my hon. Friends and other colleagues in this important debate, but it is difficult when several have spoken previously.

We all recognise the huge savings that carers make for the economy—some £87 billion a year—and we recognise that they are not just economic savings. With some understandable and notable exceptions, the majority of people who are cared for by carers have a far better quality of life if they can stay at home, being looked after by their friends and family, and can take part in their social life as fully as possible, rather than going into an institution, no matter how good it is. However, unless we put in the support yet more people will reach crisis point, with carers not being able to cope any longer. Other solutions have to be found. However, some of the solutions are often not satisfactory, either for the family or the person being cared for.

Of course, for economic reasons, carers like to stay in work if they can. Many people become carers gradually over time, rather than suddenly, so they try to keep going, but they face a number of barriers. I am a member of the Union of Shop, Distributive and Allied Workers and I have supported its campaign for carers. I am pleased that the Labour Government introduced the right to request flexible working for carers some four years ago, but as hon. Members have mentioned, there is still a mentality in some workplaces that does not allow that. This is a serious issue, because it affects not only whether people can ask for flexible working, but attitudes towards promotion. Women carers are particularly affected, and although they might like to do something different or something new, they do not like to ask because they feel that they might have to go through an interview and explain about being a carer, and they feel that that might be viewed negatively. We are missing talent and not using people to the full.

It is well documented that, often, carers take a job below their qualifications or have to compromise what they do in other ways. That is a great shame, because we are missing out on a lot of talent. Yet with a bit of flexibility and understanding—as long as employers understand that there may be certain needs: people should be able to take their loved ones to hospital, or whatever—a lot more can be done to help.

Many carers suffer financial hardship because they cannot work much or have to give up work altogether. I implore the Minister to make certain that there is no cut to the carers allowance. I am worried about the current economic situation, because the rise in VAT will put additional pressures on families with the lowest incomes. I implore the Minister to ensure that, in addition to not reducing the carers allowance, at every opportunity an increase is made to it to try to keep up with the increasing costs of living.

As my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger) explained, a great step forward would be to increase the earnings disregard to £150, for example, with an additional tapering—similar to how tax credits work—so that people earning up to £300 a week receive some benefit from it; doing so would target help to people who need it most. Targeting is important during a period of economic restraint throughout the country.

I am considerably worried about the provision of respite care. Many carers can only cope throughout the year if they have the opportunity to take advantage of respite care, even though doing so may be difficult, as the hon. Member for Blackpool North and Cleveleys (Paul Maynard) said, because they worry about leaving somebody, even for a short while. Respite care is not just an opportunity for carers to gallivant around the world. Often, it allows them to paint a room in the house, for example, because it would not be practical to do so while the person they care for was there. Perhaps the carer wants to attend their son’s wedding a couple of hundred miles away, or to do something similar. Without some respite care, such simple tasks can become impossible. This is not just about residential respite care. Respite care can involve someone sitting and looking after the person being cared for, allowing the carer to do the shopping.

People in my constituency are being denied respite care opportunities, where previously they were offered them. I am worried that that might be regarded as an easy cut for local authorities to make and that it might be an invisible cut, because, for example, one family would not know that another family had also had their request for care turned down. The criteria can be confusing and families can find that although in the past it has been possible for a family member to go into care, that is no longer so.

In taking up such matters with the local authority, I have found that some of the reasons given are economic, but it also says that it does not have the proper equipment. An increasing number of people who need to be cared for need hoists, for instance. An increasing number of carers are therefore coping at home with quite complicated issues, and when the person whom they care for goes away, equipment such as hoists, which is needed, is no longer available in an easily accessible form through the local authority.

Clearly, we must ensure that respite care does not become a Cinderella service, because it is often the only way in which people keep going. If it is not provided, the obvious alternative is that carers will stop doing the job and we will have to find full-time care for the person who was being cared for. Obviously, that is to everyone’s detriment, and the situation may end up being not so happy. Whether provided by the council or charitable organisations—help comes from many different funding streams, including third sector organisations and so on—we must ensure that funding for care in the community does not diminish.

The incoming Government must take a national care strategy by the horns, because we all know that in the next 20 or 30 years the number of older people will increase, people will live longer and the number of those who need various forms of care will increase. If we do not have a national care strategy in place quickly, cuts will be made, homes will be closed and all sorts of care services will be withdrawn. We will build up a dangerous backlog of problems that will have to be sorted out. We must get that national care strategy moving quickly, because it will have enormous implications for funding. It must be a long-term proposal; it cannot be adopted tomorrow. I beg the Government to take up the excellent work that has been done on that to date.

Finally, I want to speak about research into conditions such as dementia and Alzheimer’s disease. We all know how distressing a physical illness may be, but at least the sufferer can carry on a dialogue with loved ones and negotiate, discuss and decide the best thing to do. Sadly, diseases such as dementia and Alzheimer’s are often the Cinderella of medical research services. But the long-term impact on families of the distress caused by someone who does not recognise them and makes all sorts of accusations may be difficult, added to which sufferers may be kept alive for a long time and remain physically well. Sadly, I have seen cases of early onset dementia, which is distressing because the sufferer often needs 24-hour supervision. We must prioritise the research that may not attract big funders. Some research subjects are fashionable, but for others, such as dementia, it is much more difficult to attract funding, often because they are not pinpointable as specific diseases. There are many generalised and different forms of dementia, and we need support and backing for research.

Thank you, Mr Benton, for giving me the opportunity to speak. I hope that the Minister will be able to answer some of my questions.

Oral Answers to Questions

Nia Griffith Excerpts

Tuesday 29th June 2010 Commons Chamber

[Jim McGovern (Dundee West) (Lab)]

9. What plans his Department has for health warnings on labels of alcoholic drinks.

[Nia Griffith (Llanelli) (Lab)]

10. What plans his Department has for health warnings on labels of alcoholic drinks.

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

A public consultation on options for improving health information on the labels of alcoholic drinks closed on 31 May. The responses to that exercise are now being analysed, and we will set out our plans for next steps through announcements in the coming months.

[Anne Milton]

I thank the hon. Gentleman for his warm words of welcome. It is important to note that sometimes such warnings are not transferrable between products. As he rightly says, there have been a number of initiatives on smoking that have, without doubt, had an impact on the number of people who smoke and the number who have given up. Whether those are transferrable to alcohol we do not yet know, but we will be looking at all the evidence available.

[Nia Griffith]

The Minister will be aware of a recent Alcohol Concern report that points out that a minimum alcohol price of 50p a unit would cost a moderate drinker only about 23p a week, but would reduce alcohol-related illness significantly, and would save the NHS millions. What discussions has she had with colleagues in other Departments about such a minimum price?

[Anne Milton]

We have had a number of conversations about all aspects of alcohol policy, and what to do about the 7% of hospital admissions that are due to alcohol and the £2.7 billion cost—some estimates put it much higher, at about £5 billion—to the NHS. Without doubt, we have to change the public’s relationship with alcohol. We are committed to a ban on selling below-cost alcohol, which is important—but it is also important not to disfranchise responsible drinkers, as plenty of people enjoy alcohol responsibly. What we have to do is stop irresponsible drinking and protect people’s health.