Baroness Hoey
Main Page: Baroness Hoey (Non-affiliated - Life peer)Department Debates - View all Baroness Hoey's debates with the Department of Health and Social Care
(9 years, 2 months ago)
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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.
Kate Hoey (Vauxhall) (Lab)
Thank you, Mr Deputy Speaker. I will certainly keep to that time limit.
I welcome the debate and congratulate the hon. Member for South Thanet (Laura Sandys) and the right hon. Member for Chesham and Amersham (Mrs Gillan) on making it happen. As Members will know, I had an Adjournment debate on the subject on 29 January 2013, just after the report “A Critical Time for Epilepsy in England” had come out.
The hon. Member for South Thanet covered a wide range of points, all of which I agree with her about, particularly the stigma of epilepsy. That is a crucial point, but I will not go over all of what she said. I want to use this opportunity to ask the Minister various questions. He kindly responded in detail to the Adjournment debate, when we had slightly longer than half an hour, and I thought it would be helpful to follow up on a number of the issues that were covered.
I want to ask the Minister about the progress that has been made on urgent referrals, about which I and a number of other Members have been concerned. As I understand it, referrals are in theory currently meant to take two weeks, but I have had constituents who have had to wait well over two months. I want to check what the Minister is doing to urge commissioning groups and others to speed that up, because it really makes a difference if someone is seen as quickly as possible.
Part of the problem in looking at epilepsy is the lack of understanding throughout the country. Many people do not say that they have epilepsy of one form or another, but it is amazing how many times, when it comes up in a conversation, people say, “Oh yes, my cousin”—or uncle or whoever—“has epilepsy”. There is always somebody, because the numbers are very large. Will the Minister say something about that?
As I mentioned in the previous debate, a significant number of people with epilepsy have avoidable seizures. If the correct treatment is given at an early stage, that consequence can be avoided, which prevents benefit dependency, the loss of employment or people having to give up education due to a lack of support.
Will the Minister confirm what progress his Department has made on some of the other issues that were raised in my Adjournment debate and previous debates, and by my hon. Friend the Member for Walsall South (Valerie Vaz) when introducing her ten-minute rule Bill, which I am sure she will want to mention? There is a stigma to epilepsy, but we have to promote the positive fact that so many people with epilepsy live perfectly normal lives which we would all be proud of and happy with. Will the Minister make a commitment that the disabled freedom pass and disabled railcard will continue to be available to those with epilepsy? Will he reassure anyone who is watching that that important support will definitely be kept?
Epilepsy constitutes a disability under the Equality Act 2010, and as such, employers are required to make reasonable adjustments so that employees suffering from epilepsy can stay in work. Epileptic episodes are often triggered by work, particularly when an individual is working long hours or is otherwise under stress. However, people suffering from epilepsy are perfectly able to function at the highest levels, and in many cases can successfully medicate to reduce or entirely eliminate the occurrence of attacks. Almost three quarters of people suffering from epilepsy can be free of seizures once they find the most appropriate medication. Women of child-bearing age are restricted in the drugs that they can take, and people who first suffer from epilepsy in early adulthood often take a long time to adjust to the condition and make changes to their lifestyle.
I want to draw the Minister’s attention to the case of London Underground worker Karen Guyott, which was mentioned earlier. She is 29 years old, and she was diagnosed with epilepsy about five years ago. She has now been dismissed due to her epilepsy. Karen was one of a number of London transport staff suffering with epilepsy—I think that 16 are London Underground operational staff, and there are a further 11 working for Transport for London.
London Underground’s original response to Karen’s diagnosis was to attempt to dismiss her right away using its capability procedure. The National Union of Rail, Maritime and Transport Workers successfully fended off that attempt, and instead got London Underground to make reasonable adjustments. Now, as I said, she has been dismissed, and I think the Minister should look into that and review it.
Karen’s attendance record was exemplary, and in January this year during an episode, one of her colleagues moved her from a place of safety and left her outside a locked station supervisor’s office that was close to an escalator. Karen became disorientated and wandered towards the escalator, but her colleague realised the danger and moved her into the office. As a result of that incident, instead of providing training for Karen’s colleagues, London Underground argues that Karen’s condition is too risky for it to manage, and it is clear that it is no longer willing to accommodate her. Karen is a prominent trade union activist, but if London Underground is using epilepsy as an excuse because she is a trade union activist and it does not like her or some of the things she says, that is even more shocking.
London Underground agreed to undertake a further risk assessment that amounts to an additional requirement on Karen to which other employees without epilepsy are not subject. Since then Karen has been dismissed, but London Underground insisted that she could not work at any station that had a public highway attached to it or any escalators or stairs. Everything she did required a “zero-risk” policy—the risk had to be eliminated —and such an approach is out of step with London Underground’s usual policy.
London Underground’s equality and inclusion procedure states that employees who develop conditions during their working life must be transferred to a suitable position. As a huge public sector employer that has signed up to all legislation on equality and equal rights, London Underground should have made more effort to keep Karen employed, because with a modest amount of training that support can be provided. Given the risks that London Underground deals with regularly, a member of staff temporarily struggling to manage a relatively newly diagnosed but easily treatable condition would seem to be at the lower end of those risks.
A recent employment appeal tribunal, Dyer v. London Ambulance NHS Trust, stated that the duty to make reasonable adjustments must always be carefully considered, and that only in the rarest of cases could no reasonable adjustments be made. That affirms that even when it comes to epilepsy, the duty to make reasonable adjustments could extend to redeployment with the additional support of the Access to Work programme. A lot more must be done and London Underground must be put on report.
The Minister of State, Department of Health (Norman Lamb)
I congratulate my hon. Friend the Member for South Thanet (Laura Sandys) who has worked with my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan). Together they present a powerful case, and I join everyone in thanking my hon. Friend the Member for South Thanet for everything she has done in this Parliament. She will be very much missed, and her case today was all the more powerful because she has epilepsy and can speak with authenticity. What she said about stigma is right—I see it often in mental health, and it is exactly the same issue in this debate. The fact that not long ago someone with epilepsy could not marry is an extraordinary reminder of what we have been up against. This debate is timely and gives everyone the chance to focus on the condition and on how we can improve the lives of those who have epilepsy. I am pleased that the baton will be passed to the hon. Member for Walsall South (Valerie Vaz), who I am sure will ably continue to articulate the case for people who suffer from epilepsy.
The debate has been marked by reference to two tragedies involving young people, and my hon. Friends the Members for Wycombe (Steve Baker) and for Cheltenham (Martin Horwood) spoke incredibly movingly about the dreadful cases involving Jessica and Emily. We will all agree that we owe it to those two girls to do everything we can to improve the experience of people with epilepsy, and to avoid tragedies of that sort happening. It is important to raise awareness, not only among the public but among clinicians, of the condition and how best to respond to it.
I pay tribute to the work of organisations involved in campaigning and research into epilepsy. The Epilepsy Society is based in the constituency of my right hon. Friend the Member for Chesham and Amersham, and Epilepsy Action in Leeds is close to the constituency of my hon. Friend the Member for Leeds North West (Greg Mulholland). Young Epilepsy has also been mentioned, as has the important work done by SUDEP Action. I remember meeting its members when they were establishing the register, and, as my hon. Friend the Member for Cheltenham made clear, it has the potential to provide incredibly rich data and evidence to help us understand why sudden unexpected deaths occur, and how we can prevent them from occurring in the future. All those organisations are doing incredibly important work.
The hon. Members for Vauxhall (Kate Hoey) and for Easington (Grahame M. Morris) mentioned discrimination. They will understand that I cannot comment on an individual case—I am an ex-lawyer and cautious about these things—but the important point about combating disability discrimination, including for epilepsy, cannot be overstated. Where there has been discrimination, it is incredibly important that there are consequences and that lessons are learned to avoid such things happening in the future.
I cannot begin to do justice to all the important points raised in this debate, so I undertake to write to all hon. Members who have taken part and to respond on important points such as co-commissioning laser ablation treatment, which was mentioned by my right hon. Friend the Member for Chesham and Amersham, as well as many other issues.
Norman Lamb
I am certainly happy to explore that, although the hon. Lady will understand why I cannot get involved in the case.
The Government are committed to securing high-quality outcomes for people in England living with epilepsy, whose number is currently estimated at more than 450,000. There are many different types of epilepsy seizure, and although some patients have the condition from birth, others become epileptic later in life. For the majority of people with epilepsy, the condition can be well managed—my hon. Friend the Member for Leeds North West talked about the experience of people in Leeds and the excellent care provided by hospitals there—and they can lead independent and healthy lives. As such, the provision of services for these patients is the responsibility of local commissioners, who are best placed to manage services for local populations. It is critical, however, that those who require more specialised care can access the right services and treatments, which is why NHS England commissions such services nationally. That need not be undermined by co-commissioning with local areas.
The Government recognise the importance of ensuring that patients with suspected epilepsy are diagnosed swiftly and accurately. As most people will be aware, seizures are the main symptom of the condition, and it is common practice for anyone who has experienced such seizures to be referred for assessment by a specialist. Neurological conditions such as epilepsy are part of the generalist undergraduate medical curriculum and a component of GP training. As such, GPs should be able to manage, monitor and appropriately refer the epileptic patients in their care. In secondary care, there are nearly 2,000 full-time equivalent neurologists, and for 2015-16 Health Education England has made a commitment to invest in 217 neurological specialty training places. In addition, specialist epilepsy nurses should be a key element of both routine and specialist neurological care, as set out by NICE and NHS England respectively. I know that my hon. Friend the Member for Southend West (Sir David Amess) has concerns in his locality, but it ought to be part of the picture in each area.
To support clinicians in the management of this condition, NICE has published a guideline setting out best practice on the diagnosis, treatment and care of patients. The guideline recommends that referrals for patients with suspected epilepsy are urgent, with patients being seen within two weeks, if possible. I think that the hon. Member for Vauxhall mentioned a wait of two months. That is not acceptable and should not happen, and the local organisations responsible for the delays should be held to account. If it is possible in other areas of the country, it ought to be possible everywhere.
In addition, if seizures are not controlled or diagnosis is uncertain, people should be referred to a specialist service within four weeks. Most people with epilepsy can have their condition successfully controlled with anti-epileptic drugs, and there are more than 25 types of drugs with which to achieve seizure control. The NICE guideline makes it clear that treatment should be individualised according to the seizure type, epilepsy syndrome, co-medication and life style. On the point made by the hon. Member for Erith and Thamesmead (Teresa Pearce), women with epilepsy wanting to conceive must—absolutely must—be given accurate information and counselling about medication such as sodium valproate. That is critical. I mentioned that the Department was considering the possibility of a red flag system, and I hope it will be possible to achieve that.
For some people with more complex conditions whose epilepsy is more difficult to control, other procedures, such as surgery or vagus nerve stimulation, might be appropriate. Patients whose epilepsy is particularly difficult to treat may be referred to a specialist neurological care provider. In particular, children with epilepsy should be considered for specialised care at an early stage, because of the developmental, behavioural or psychological effects associated with suffering from continuing seizures.
In conclusion, this has been an incredibly important debate, and I will do everything I can to follow up all the important points raised.