Covid-19: Vaccination Prioritisation

Baroness Hoey Excerpts

Wednesday 25th November 2020 Lords Chamber

[Lord Bethell (Con)]

The noble Baroness makes the case extremely well for care providers. The prioritised list starts currently with older adult residents in care homes and care home workers, but she makes the case for the 250,000 who may not be on that principal list. That is something that I will take away with me.

[Baroness Hoey (Non-Afl)]

My Lords, I add my voice to the plea that those sleeping rough on our streets are not forgotten when vaccination occurs. I ask the Minister to rule out any government-assisted moves to stop people who decide, just as they do not want vaccination for flu, that they do not want to be vaccinated for Covid from travelling, certainly within the UK.

[Lord Bethell (Con)]

I hear loud and clear the case for rough sleepers made by both the noble Baroness and my noble friend. The case was made to my colleague, my noble friend Lord Greenhalgh, as well. That is a really important part of the vaccination programme and we will look into the most effective way of doing it. On the noble Baroness’s second point, I am not aware of any moves to try to limit or create mandatory situations for vaccines within the four nations.

King’s College Hospital Foundation Trust

Baroness Hoey Excerpts

Tuesday 12th December 2017 Commons Chamber

[Mr Dunne]

My hon. Friend takes a close interest in what is happening in London’s hospitals, where she regularly works shifts. From time to time, there is a need for some interim managers to fill vacancies and gaps, but she is absolutely right that we have taken significant action to limit the excessive amounts that some have been paid. The amounts have now been capped and are being driven out of the service, and the interim mangers are being encouraged to take up substantive positions.

[Kate Hoey (Vauxhall) (Lab)]

I pay tribute to the staff at King’s, who have looked after so many of my constituents so well. Does the Minister agree that one thing we have to learn from this is that when a trust takes over a failing hospital, the challenges and difficulties can be much more than people have said, and the money given has not always been spent as it should have been? Does he also agree that just appointing a former head of the civil service to chair a trust does not necessary mean that they will have the attributes to do the job and that sometimes they are so busy doing other jobs that they might just take their eye off the ball?

[Mr Dunne]

In relation to the hon. Lady’s first point, I think that the experience has been variable; some outstanding trusts have taken on failing hospitals and managed successfully to turn them around, and others have found it more of a challenge. I accept that it is specific to the circumstances, and we are looking to learn from the various experiences to ensure that we encourage the right trusts to buddy up with those that are in trouble. In relation to her second point, I gently point out that Lord Kerslake has been providing advice to the NHS, and he has been spending a considerable part of his time providing advice to the Leader of the Opposition on a whole range of non-NHS-related topics.

Epilepsy

Baroness Hoey Excerpts

Thursday 26th February 2015 Commons Chamber

[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.

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[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.

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[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.

[Kate Hoey]

When he leaves the Chamber today, will the Minister or one of his staff at least make a telephone call to get some more information about this young woman and London Underground’s behaviour?

[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.

Herbal Medicine (Regulation)

Baroness Hoey Excerpts

Tuesday 9th July 2013 Westminster Hall

[David Tredinnick]

I am grateful to my hon. Friend, who is ever supportive. He has tabled questions and acted for his constituents on this issue, as he always does. He is right. Three quarters of the population of the United Kingdom have used traditional Chinese medicine, herbal medicine, phytotherapy or one of the other disciplines sometimes classed as complementary. There is a huge swell of people out there who want such medicines. Going back to Dame Sally’s remarks, people are now frightened of using antibiotics; they are worried about overuse and that, when they really want them, they might not be effective. We have a crisis not only of effectiveness but of confidence. People who tend to go down the herbal medicine route have a lot of confidence, however, because they are dealing with nature and natural products that have been used over the years. Properly administered, those products do not have side effects and they are not prone to becoming ineffective.

[Kate Hoey (Vauxhall) (Lab)]

I congratulate the hon. Gentleman, who is knowledgeable on the subject. Would it be helpful if he outlined what he feels might happen if the Government do not do what they said that they would do and what we all want to see happen on regulation?

[David Tredinnick]

I am grateful to the hon. Lady, with whom I discussed the debate earlier, and I will be coming on to the options available to the Minister. In fairness to him, I know that he has been focused on the matter, with his colleague in the Lords, the noble Earl Howe, a distinguished Minister. However, before I look at the solutions and some of the obstructions and problems—why we are not getting a solution—I will first go through where the Government are now.

On 16 February 2011, the then Secretary of State, my right hon. Friend the Member for South Cambridgeshire (Mr Lansley), made a written statement on the regulation of herbal medicine. Subject to parliamentary procedures, he aimed to have legislation in place by 2012—importantly, when the European law kicked in—and he stated:

“When the European Directive 2004/24/EC takes full effect in April 2011 it will no longer be legal for herbal practitioners in the UK to source unlicensed manufactured herbal medicines for their patients. This Government wish to ensure that the public can continue to have access to these products.

In order to achieve this, while at the same time complying with EU law, some form of statutory regulation will be necessary and I have therefore decided to ask the Health Professions Council”—

the strong regulatory body—

“to establish a statutory register for practitioners supplying unlicensed herbal medicines.”—[Official Report, 16 February 2011; Vol. 523, c. 84WS.]

Progress, however, has been slow.

Before I get to the solutions, as prompted by the hon. Member for Vauxhall (Kate Hoey), let me emphasise that, although a Health Minister is responding to the debate, we should not be under any illusion that only the Department of Health is affected. If we do not got things right, we will see a large number of small businesses folding, because the whole supply chain of herbal medicine will collapse. That is extremely unsatisfactory.

Furthermore—I will not stray into this territory for long, Mr Bone, in case you are thinking of calling me to order—when the Science and Technology Committee went to Harwell to look at the European Space Agency, at its work on satellites and at what we are doing with the global positioning system in Europe, we looked at the Catapult centre, which is an organisation backed with hard cash by the Government to drive science forward. That is fine, and I asked them whether it was picking winners, but while I was listening in the state-of-the-art space centre, I was thinking, “But what about the small businesses we already have?” What will we do about the people who are providing a service to the community in health care? What will we do with them if their livelihoods are under threat?

[David Tredinnick]

My hon. Friend illustrates the point. The European directive on traditional herbal medicinal products now prevents third-party manufactured herbal medicines being prescribed to patients by practitioners, as well as individualised herbal medicines prescribed by practitioners and manufactured by a third party. One of the communities in the herbal medicine diaspora most affected is that of traditional Chinese medical practitioners. The directive has already had a negative impact on the availability of Chinese herbal medicine in the UK and Europe. The problem lies in the fact that the directive stipulated that, to prove traditional usage, there must be a 30-year history of usage, of which 15 years must be in the European Union. That can be difficult, because many Chinese medicines have been used for thousands of years in China—Chinese medicine goes back 3,000 years at least—but not in the European Union or the UK.

The directive was also conceived before we had the vast opening up of trade with China. Probably, no one envisaged what was going to happen. I will touch on that, because I was speaking to the Foreign Secretary about it last week. We now have a situation in which, once stocks of some Chinese medicines run out, it will not be possible to buy many of the formulations currently available.

[Kate Hoey]

Is this another example of the European Union interfering in all sorts of areas about which our own country should be able to make up its mind? Is this not another opportunity to say that we need to get some powers back from the European Union or leave it altogether?

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[Kate Hoey (Vauxhall) (Lab)]

It is a pleasure to follow the hon. Member for Strangford (Jim Shannon). I congratulate the hon. Member for Bosworth (David Tredinnick) on securing the debate, which is very timely, given that the House is about to rise for the summer recess, and we are seemingly still no nearer to getting what was promised some time ago—indeed, by the previous Government as well. It has been a long saga, as the hon. Gentleman outlined. I shall speak only briefly, because I want to give the Minister a long time to explain why we are in this position.

I start by reiterating my view that when people voted to join the common market back in 1975, they never would have dreamt that the EU would interfere in this kind of thing. However, it is absolutely crucial that if we are going to prevent the very well-established and effective herbal medicine products from disappearing, literally, from our shops and stop the consequent blow that that would mean for the retail sector, we need to get this regulation as quickly as possible.

I dislike regulation and want to see less of it. I believe that most people have common sense; they know what is good for them and want to do what they think is right. They do not need bureaucrats from the Department of Health telling them all the time what they should and should not be taking. We hear that all the time in so-called public health adverts, when most of what is said is either common sense or complete nonsense. I am a great believer in using not only herbal medicine, but natural products from our countryside. There are so many common-sense things that most of us grew up with—not necessarily only people brought up in the countryside but them in particular. If someone got stung by a nettle, they went immediately and looked for a docken leaf. We did all sorts of things naturally, and now, very few people seem to feel that that is what we should look to. I am afraid that vested interests are the reason for a lot of that. The pharmaceutical industry does not want to see it happening and would love to get rid of all health food shops.

[Mr Gregory Campbell]

Does the hon. Lady agree that as well as the vested interests that she alludes to, at times, in the medical establishment, there is almost a form of elitism that denigrates herbal medicine, suggesting that it only has a placebo effect and is not practically of benefit to people, even though many testify that it is?

[Kate Hoey]

The hon. Gentleman puts it very well. That is what happens, not only in the pharmaceutical industry, but with doctors, who have a very narrow view of what health is, in my opinion. That makes it all the more important that we ensure that alternative medicines are available. It is great that we have an heir to the throne who believes that some of this is really important. I wish that the Department would listen to His Royal Highness Prince Charles, because some of what he says on the matter is absolutely right.

The other issue that I want to raise is about the Health and Care Professions Council, which I think the Minister has overall responsibility for. It is based in my constituency and does a brilliant job. However, recently, it seems as though the Department’s general view on what it does and how it works has changed. We have been trying to get sports therapists registered for a very long time. Everyone agrees that that should happen. The HCPC, which is meant to be the body that gives advice, has gone and said, “This must be registered. We must do this.” Sport England wants it to happen, as does anybody involved in sport; yet somewhere in the Department, there is a block. I actually do not think that it is Ministers; I think that it is officials. Officials do not care who is in government; they do what they want to do; and they will continue to pull a line. It seems as though the Minister or the new Secretary of State could be dangerously close to heeding advice from officials to drop the whole thing. I worry very much about that.

[David Tredinnick]

When I was working on my speech for today, I looked at the lists of those who are regulated by the Professional Standards Authority for Health and Social Care and the Health and Care Professions Council and I could not for the life of me work out why some were on one list and some on the other. There is another debate to be had on that issue.

[Kate Hoey]

I hope that the Minister will give us some clarification on that.

Many campaign groups, including Consumers for Health Choice, are very clear that they want the Secretary of State and the other Ministers to ignore the siren call from officials and fulfil their promises. This is very simple. When the register was announced back in February 2011, it was warmly welcomed by virtually everyone. Consumers were pleased that the register allowed an exception for herbal practitioners from the traditional herbal medicinal products directive—an EU law that became fully applicable in April 2011 and would have meant the banning of all unregistered herbal medicinal products. People will remember the campaign that was held across the country. All MPs got many letters of protest from constituents and from herbal shops and health shops. At the time, the position was that virtually all herbal medicinal products would have been banned. A register would have allowed practitioners to access unlicensed products, thus preserving choice in relation to safe and effective products for thousands of consumers. We all want people to be safe, but that has to be within the broad band of common sense and experience, not because a particular official decides that they do not like a product.

The industry was very pleased. Obviously, the practitioners were delighted that they could still use products that they had used for many years and would not see their consumers drift away, disappointed by a restriction stopping them buying things. All the manufacturers and retailers were pleased for the same reason. It was a win-win situation, so where is the register? The reality is that, because campaigners were reassured by the Government’s words—perhaps people should have been more cynical about the promises of a Government of any sort; that is why there is such a disconnect between the public and politicians—we relaxed the pressure to introduce the register. Of course, the Government got distracted by the huge and messy Health and Social Care Bill and we lost the then Secretary of State. That is where we are now.

I am very concerned and I want to hear the Minister give us an assurance today that this proposal has not been dropped, that the officials are not getting their way and that the register will be introduced as quickly as possible, so that everyone can exercise choice about what they use—choice about their health and how they treat their body—in a way that is not dominated by directives from the European Union.

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[Dr Poulter]

The hon. Gentleman is absolutely right to highlight the strong working relationships, particularly with his colleague in Northern Ireland. We are grateful for that continuing strong working relationship on both this and other issues, and I look forward to working with him.

I reassure my hon. Friend the Member for Bosworth, who was concerned about the short and the long grass, that the intention behind his involvement in the working party is to keep it firm to its task. I am sure that he will want, as part of his involvement, to ensure that that happens. When we meet to discuss this further after the House returns in September, we can ensure that the proposals are proportionate and fit for purpose, and that they protect the public, including through giving people an informed choice about the use of herbal products.

[Kate Hoey]

Will the Minister give way?

[Dr Poulter]

I will give way for the last time.

[Kate Hoey]

I tend to agree about the long grass: officials are always coming up with another working party, because it is a nice way to postpone things. Will the Minister give us some idea of the time scale?

[Dr Poulter]

We need to sit down together. I very much want to involve my hon. Friend the Member for Bosworth, and the hon. Lady would be very welcome to join that discussion when the House returns. The idea is to get a working party up and running in the early autumn to ensure that we progress matters. We obviously need to discuss issues raised today about statutory regulation and third-party manufactured products, and to look at such products in detail to see which might be classified as more akin to food additives or vitamin and mineral supplements and which as more akin to medications, because there is a spectrum. We need to work through such issues to make sure that we get to the right place.

It is important that any legislation not only passes the test of principle—we are all signed up to it—but is practical and fit for purpose. Particularly in light of the judgment in the case of the EU Commission v. Poland, we have other issues to consider that make the matter a little more complex. I reassure my hon. Friend the Member for Bosworth and the hon. Member for Vauxhall that we are committed to making timely progress, and when we meet on our return in September, we can progress things. I am sure that my hon. Friend’s involvement will keep the Government keen to their task.

Accountability and Transparency in the NHS

Baroness Hoey Excerpts

Thursday 14th March 2013 Commons Chamber

[Kate Hoey (Vauxhall) (Lab)]

It is a pleasure to follow the right hon. Member for Charnwood (Mr Dorrell), who speaks with a breadth of experience and history in the national health service, and I congratulate the hon. Member for Bristol North West (Charlotte Leslie) on securing this long debate, providing an opportunity to all of us to say a few words.

I agree wholeheartedly with everything my hon. Friend the Member for West Lancashire (Rosie Cooper) said, particularly about what seems to me, too, to be a growing public body desire for secrecy. This is happening not in the national health service alone, but in many other bodies. Indeed, as my hon. Friend well knows, it is happening in this House. I am concerned about a number of issues—how staff are treated, getting rid of the telephone exchange and a whole number of other decisions taken up there somewhere. We, as Members who work here, have very little say.

It is important for us to remember the Nolan principles of public life to which every public body is meant to sign up—accountability, openness, honesty and leadership. I do not want to say much specifically about what happened in Mid Staffordshire, but it was appalling. As someone who has had a good and well-led hospital in my constituency for many years, I find it almost unbelievable that all that could have happened in the Mid Staffordshire hospital with so few people seeming to know what happened or to speak out about it. Then, when it was pointed out, no one listened. That provides a terrible warning about what can happen. We all think that we know what is happening in our constituencies, but we do not always, as this episode has shown.

Let me talk about my local hospital Guy’s and St Thomas’, King’s College hospital and SLAM—the South London and Maudsley hospital. What has been called the “King’s Health Partners” has sought to bring together the research work at King’s College medical school with others, and the body is now growing to be almost an entity in itself, making decisions, sending out publicity and getting further and further away from the foundation trust.

Looking back to when my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) was Secretary of State for Health, some of the decisions he made in the Health Act 1999 were more about accountability than anything that has been done since by any Government. For example, he instructed NHS chairmen to hold their board meetings in public, while non-executive directors were required to live in the area served by the trust—a crucial step that fundamentally changed St Thomas’ hospital when we had a local chairman who knew the area, was involved in the hospital and cared about it. She spent all her time as chairman wandering around the hospital trying to find out about everything that was going on: she was accountable to everyone. That was crucial to the public, too, as they knew that they had people on the board who knew what was happening in the locality.

I believe that one of the first responsibilities of non-executive directors—they are not part of the management —is to visit the wards, to talk to patients, to collate local concerns and to talk to MPs, local councillors and the local authority. That was always happening. We had a very good system. There were concerns about the treatment of the elderly at one stage in one of the wards for elderly people at St Thomas’, but they got dealt with very quickly because we had a responsive chairman and a responsive board. A lot of that happened when my right hon. Friend the Member for Holborn and St Pancras was the Secretary of State. The Health Act 1999 also gave the chief executive officer absolute personal responsibility for clinical governance standards—another important reform—in addition to the responsibility to be the accountable officer.

Later we had foundation trusts, although I have to say that I did not vote for them. I have had a well-led foundation trust up to now, but I did not feel that this was the right way ahead for the national health service at the time. We have got them, however, and some foundation trusts saw fit to erode the principles as financial considerations took precedence over clinical standards on many board agendas. The foundation trusts still remain the chief executive officer’s responsibility.

One thing the King’s Health Partners are doing in the name of foundation trusts is steamrolling ahead to bring about a merger of Guy’s and St Thomas’ hospital, which is a huge trust, King’s College hospital, which is another huge trust, and the South London and Maudsley trust. It is believed that the merger will somehow lead to a “world-class”—I do not know how many times Members have heard the term—hospital.

I am furious and angry—as are, I think, all five of the MPs representing the area at how this merger has been handled. The lack of openness has been appalling and there has been no public board meetings or disclosure of information about the proposed changes. The proposals have been either badly put forward or not put forward at all. The board at St Guy’s and St Thomas’ has an occasional surreal meeting as a showcase for public involvement, but it never discusses the real issues. It opens meetings for the public only when it suits the board.

[Lyn Brown]

Does my hon. Friend agree that the plans for reorganisation of the trusts south of the river need to be put on hold?

[Kate Hoey]

That is precisely what the five Members of Parliament have asked for. Recently, on 28 February, we heard from the chairman of Guy’s and St Thomas’, who was previously a permanent secretary at the Department of Health. That takes me back to one of my earlier points about people moving around within the health service. It is always somebody who has been someone else in somebody else’s patch that gets a job with another NHS trust. This chairman wrote to say that the project is forging ahead with a full business case. William McKee, who brought together trusts in Northern Ireland, has been appointed and we are told that he is going to spend at least £5 million to bring about the business case to show why this will be such a wonderful idea. The right hon. Member for Bermondsey and Old Southwark (Simon Hughes) and I have written back asking who is actively responsible, how the money from the different bodies is being allocated, what the precise budget will be and how it will be spent by whom. The whole accountability thing is there in a nutshell. Who is actually accountable? Does the Secretary of State have any say whatsoever? No. Apparently he is only interested if the move will clearly not be good for patients in clinical terms.

I know that the establishment of such a large trust will be totally against the interests of people. Trusts cannot operate on such a large scale. One chief nurse cannot be responsible for all those hospitals.

South London Healthcare NHS Trust

Baroness Hoey Excerpts

Thursday 31st January 2013 Commons Chamber

[Mr Hunt]

In such matters, what a Minister does is take very seriously the medical advice they are given—I am sure the hon. Lady’s party was exactly the same when it was in power. Medical advice suggests that the way forward I am deciding on and announcing this morning will save 100 lives, and I am taking the decision on that basis. The hon. Lady would do no differently in my shoes.

For child poverty, changes in demography are taken into account in the modelling used, but the overriding priority has been to improve clinical services. That will make the biggest difference to the most socially disadvantaged people, including the frail elderly who—I agree with the hon. Lady—are often the least well served by our current NHS structures and the silos between what is done by local authorities and the NHS. I and my ministerial colleagues in government are currently doing a lot of work to break down those barriers and offer a more integrated service to the frail elderly, so as to avoid some of the problems mentioned by the hon. Lady.

[Kate Hoey (Vauxhall) (Lab)]

Surely the Secretary of State understands—even if Sir Bruce Keogh does not seem to do so—the huge effect that downgrading the maternity unit at Lewisham will have on King’s college and St Thomas’ hospitals. They are full to the seams and will not be able to cater easily for increased numbers of women. What exactly is the Secretary of State offering hospitals such as mine in terms of finance? Will he lay out clearly that this kind of merger of King’s college hospital, Guy’s and St Thomas’ and the mental health trust is not the way forward when it has been brought in from the top by those same experts who get it wrong so often, and when local people have had absolutely no involvement? In view of the disruption taking place, will he say that it is absolute nonsense for millions of pounds to be spent on consultants and business plans to bring together a huge organisation that will not be in the interests of local people?

[Mr Hunt]

On the merger, may I gently point out that I want to follow the hon. Lady’s advice if she is against people deciding things from the top down. It is for local trusts to negotiate such things, and they must do so on the basis of what is in the clinical interest of the population they serve. I will not be a Secretary of State who steps in and stops those things happening, unless they amount to a reconfiguration, in which case procedures are in place that require proper democratic support for any changes.

On the changes to maternity provision in Lewisham, we have allocated £36 million to expanding the capacity at those other hospitals that will take on more complex and high-risk births as a result of the proposals, and we will work closely with those trusts to ensure that that capacity is in place. I agree with the hon. Lady that it is extremely important for such work to be done in a meticulous way so that we get the better clinical outcomes we want as a result of what I am announcing today.

Epilepsy

Baroness Hoey Excerpts

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey (Vauxhall) (Lab)]

I thank Mr Speaker for granting this Adjournment debate, which serves to give the relevant Minister—who I am pleased to see has just arrived in the Chamber; perhaps I rose to speak a little too quickly—an opportunity to update us on how some of the changes to the health service locally and nationally, such as in respect of commissioning, will help to improve the lives of those who suffer from epilepsy.

My hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) secured a Westminster Hall debate on epilepsy in November 2011 and my hon. Friend the Member for Walsall South (Valerie Vaz) introduced an excellent ten-minute rule Bill on epilepsy in November 2010. I am pleased to see that the chair of the all-party group on epilepsy, the hon. Member for South Thanet (Laura Sandys), is present.

As is the case for all Members, hundreds of my constituents suffer from epilepsy, and I am grateful to many of them for their input into this debate. I am especially grateful to Ashleah Skinner, who has a great deal of knowledge of and interest in epilepsy and disability issues. No one understands the difficulties and challenges that face epileptics better than those who suffer from the illness.

For the record, I should point out that epilepsy is defined as a tendency to have recurrent seizures, sometimes called fits. The seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption of the normal messages passing between brain cells. Epilepsy is, of course, not one condition but a composite of about 40 different types of seizure and up to 50 different syndromes.

An epilepsy diagnosis can be a shattering blow to the individual concerned. All sorts of things that have been taken for granted are no longer automatic: they might lose their driving licence, for instance, or their employment, which might in turn lead to benefit dependency. Approximately 600,000 people have epilepsy, which is about one in 100 people, and every day about 87 people are diagnosed with it, which amounts to 32,000 each year.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this very important health issue to the Floor of the House. One other issue relating to epilepsy that my constituents raise with me is holiday insurance. Does she think we should be doing more about that, whether directly with the insurance companies, with the overall body or with individuals?

[Kate Hoey]

I thank the hon. Gentleman for his intervention, and I know of his continuing interest in this issue and the contributions he has made in the House. If we were to get into a discussion about insurance and travel, I could talk a great deal about the discrimination that some travel companies display, and obviously he has particular expertise in this issue. Such discrimination is all part of a lack of understanding and knowledge of epilepsy among the general public, which runs through this whole debate. That perhaps applies to travel companies as well.

About 1,150 people a year die from epilepsy, with three dying every day, and about 40% of all these deaths and 59% of the childhood deaths are potentially avoidable. However, the new research shows that the level of epilepsy mortality is rising. Achieving absence of seizure—freedom from seizure—is key to saving lives and saving money, as well over 100,000 people are living with avoidable seizures. Just last week, Epilepsy Action, one of the important charities within the Joint Epilepsy Council, which brings together all the campaign groups on epilepsy, published a new report “A Critical Time for Epilepsy in England”. Its launch was hosted in the House of Commons by the all-party group on epilepsy, which is chaired by the hon. Member for South Thanet. I recommend the report to anyone who wishes to find out more about what more needs to be done.

Between April and September 2012—the report is very up to date—Epilepsy Action carried out a survey of clinical commissioning groups, acute trusts, local authorities and people with epilepsy. I have read the report and it backs up a number of the trends that I have heard about and a number of the concerns that individual constituents have raised with me.

[Jim Shannon]

Will the hon. Lady give way?

[Kate Hoey]

I will. We have slightly more time tonight, although I know that perhaps not all Members here want to stay until 7 pm.

[Jim Shannon]

I thank the hon. Lady for her graciousness in giving way again. Some 20,000 people in Northern Ireland have epilepsy, which is one in every 90 people. Does she feel, as I do, that the immensity of the scale of epilepsy in the population is unknown? How can we raise that profile and make more people aware of what is happening?

[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.

[Bob Stewart (Beckenham) (Con)]

I have dealt with epileptics who have collapsed in front of me and had a fit. Does the hon. Lady think that we are doing all we can to educate our children at school on how to recognise epilepsy and, just as important, what to do with someone who is suffering a fit?

[Kate Hoey]

Although things may have improved, the position in education authorities across the country is patchy. I hope that the Minister might refer to that in his speech.

I am pleased that my hon. Friend the Member for Walsall South, who introduced a ten-minute rule Bill on this matter, is now in her place. I know that she will want to say something at some stage.

I referred to the Epilepsy Action report, and it is important that people look at it because it showed some worrying results. I am sure that the Minister will have read it. Two thirds of the clinical commissioning groups—66%—do not have or do not intend to produce a written needs assessment of the health and social care needs of people with epilepsy. Only 27% of the 113 out of 149 local authorities that replied included a section in their joint strategic needs assessment mentioning the care of people with epilepsy. Only 17% of the clinical commissioning groups have appointed a clinical lead for epilepsy and only 20% of acute trusts stated that the average waiting time for an adult with suspected epilepsy to see an epilepsy specialist consultant was two weeks or less.

Crucially, only half of the people interviewed by Epilepsy Action told the interviewer that they had seen an epilepsy specialist nurse. I cannot overestimate the importance of specialist epilepsy nurses, and I am sure that other hon. Members will agree. Specialist nurses are vital and there is still concern that there are not enough of them. In its guidance, the National Institute for Health and Clinical Excellence said that they should be an integral part of the medical team providing care to people with epilepsy, but it seems that in 2013 half of our acute trusts and primary care trusts in England still do not have that provision.

The report contains many more worrying statistics, but I shall not go through them all. All in all, however, there seems to have been no major improvement in services although I stress that, as with so many other matters, the provision is patchy, with some excellent services in some parts of the country. My local trust, Guy’s and St Thomas’, does an excellent job with the resources it has. Dr Michael Koutroumanidis leads the team and as well as running the tertiary clinic runs a first-time seizure clinic once a week. Much more could be done, however, with more resources and if greater priority were given to those services.

I have some questions for the Minister. If he has read the report, perhaps as his bedtime reading last night, he will be aware of some of them. Will he ask the Secretary of State for Health to refer the whole of epilepsy services to the National Audit Office and invite it to conduct a value-for-money inquiry? That is one of the key requests from Epilepsy Action. Way back in 2007, the all-party group estimated that the avoidable cost of providing the current poor NHS service was £189 million a year based on the NICE figures. The main reason that such money could be seen as wasted is the shocking misdiagnosis rate, which is 20% to 30%, and the poor access to specialist skills. The financial consequence is that patients receive inappropriate, costly and ineffective treatment at the expense of the NHS and the public, never mind the personal consequences of their true condition not being treated. I hope that the Minister can say that that might be a useful piece of work for the Audit Commission.

I ask the Minister to ask the NHS Commissioning Board to include outcomes indicators in the NHS framework. I hope that people can get to the bottom of what all these terminologies mean. The hon. Member for Beckenham (Bob Stewart) has previously referred to the NHS using terms that mean little to the average member of the public, but it is important that we have the statistics to address the unacceptable number of avoidable deaths and the still unacceptable rates of seizure freedom.

Another issue that I want to ask the Minister about is the revised NHS constitution, where the word “pledge” will be used. We want to give people the right to involvement in discussions about the planning of their care and the right, as opposed to a pledge, to be offered a written record of that agreement. Again, published research shows that only 14% of people with epilepsy have a care plan. All those things are important. If the current review of the NHS constitution recommends making care planning a pledge from the NHS to patients, that should be toughened up to encourage a programme of care planning and by making it a right for people.

The Minister could ensure that as a matter of urgency the chief executive of the NHS raises the lack of engagement by the clinical commissioning groups in assessing the needs of people with epilepsy. It seems that that has been ignored by many of them, or lumped together with a number of other health issues that do not necessarily cover epilepsy’s particularly special nature.

There is a whole debate to be had about children with epilepsy, and not just in relation to their school education. There is a long history of children with epilepsy not achieving their full educational potential, yet with the right support there can be huge improvements. Epilepsy can affect the child’s education either because of the underlying cause or because they might have to miss lessons or interrupt them to take medication.

[Valerie Vaz (Walsall South) (Lab)]

I thank my hon. Friend for securing this debate, and I congratulate Epilepsy Action on producing the report. This is a wonderful opportunity to remind the Minister of my ten-minute rule Bill, in which I ask for two simple things. First, immediate referrals from GPs to specialists are needed. That is where the costs arise—both monetary costs and the cost in lives. If people can be referred directly to a specialist, they need not go through an interim stage to someone who is not a specialist. This covers a wide range of conditions, although it manifests itself as epilepsy—other related conditions might not manifest themselves at all—so anyone might have absences, and they need to know why. Secondly, we need an action plan for children in schools that is similar to that under the Autism Act 2009.

--- Later in debate ---

[Kate Hoey]

I thank my hon. Friend, and I referred to her ten-minute rule Bill. As the Minister has slightly longer than he thought for the winding-up speech, it would be helpful if he referred to progress on my hon. Friend’s Bill. I appreciate that he is a Health Minister, but I want to raise some issues that relate to employment, welfare and benefit rights. If he cannot answer my questions, I hope that he will ensure that the responsible Minister does so.

There is no doubt that most people with epilepsy want to work, but many of them require additional support. Government schemes, such as Access to Work, can be beneficial to people with epilepsy by getting them off benefits and into work, which should always be a top priority.

I was surprised to learn from a recent parliamentary written answer that the Access to Work scheme in England and Wales between May 2010 and 30 June 2012 helped just 1,360 individuals with epilepsy. In my constituency no one with epilepsy was helped by the Access to Work scheme. There seems to be a lack of awareness of the scheme and inadequate information being given to people. I hope the Minister will continue to address the problem. Many constituents claiming sickness benefits want to work, but have ended up on benefits because they did not have the proper support when they were in employment. The Access to Work scheme could have prevented them from leaving employment. It is in the Government’s interest to take the matter seriously.

[Jim Shannon]

The hon. Lady has been very kind in giving way. I know she is trying to get as much time on the subject as she can. There is another important issue: disability living allowance for those who have epileptic fits and may need extra help. Does she think that one of the Minister’s colleagues in the Department for Work and Pensions may be able to do more for those with epilepsy to ensure that they get all the benefits that they are entitled to, particularly DLA?

[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.

EU Working Time Directive (NHS)

Baroness Hoey Excerpts

Thursday 26th April 2012 Westminster Hall

[Kate Hoey (Vauxhall) (Lab)]

I, too, pay tribute to the hon. Member for Bristol North West (Charlotte Leslie) for her tireless work on this issue. I was pleased to be able to add my support to help secure the debate. It is a pity it is not taking place in the main Chamber, but it is great that we are having it and it shows to the Government the level of concern. Many hon. Members wish to speak, so I will be brief.

I come here not as a medical practitioner or as someone with any real medical knowledge, but as someone who cares deeply about the NHS and patient care. The hon. Lady outlined the difficulties very clearly, and in detail. We will hear many examples of what is wrong with the EU working time directive and its application to the NHS. We have to remember right at the beginning that the NHS is not a tick-box system of bureaucracy; it is about the care of patients, and the care of patients is in the hands of the people who work in it. If we allow the standards and the professionalism of our NHS work force to deteriorate because of the directive, we will leave a legacy that, in many years to come, we will look back on saying, “How could we have let that happen?”

I am privileged to have a great teaching hospital—Guy’s and St Thomas’, which is very near this place—in my constituency. A tremendous amount of effort has gone in to ensure that patient care is at the centre of everything that happens there. A terrific amount of work was done by the previous chairman, Patricia Moberly, to ensure that, fundamentally, everything that happens in the hospital is about patient care. It does not just serve its local community of Lambeth, but the whole of London, the whole of the country and patients from all over the world.

Understandably, the trust has implemented fully the EU directive. It is not, as was made clear to me, in the business of breaking the law. However, I have had many discussions about the directive, and the medical director of Guy’s and St Thomas’ told me that, despite doing everything possible to utilise more consultant presence out of normal working hours, and making every hour and minute count while a doctor in postgraduate training is at work,

“We are still left with a rigid template which is now seemingly outdated and needs revision for professional training.”

Many points have been touched on, but he raised the specific issue of the 13-hour shift limit leading to multiple handovers in a 24-hour period. He suggested that even an extension to 15 hours on weekdays, with appropriate compensatory time off later, would deliver a service with better continuity of care.

The medical director also raised the following important points:

“Many doctors in postgraduate training live in other towns and cities due to the rotational programmes of hospitals involved in their training. At weekends with 12 hour shifts, and with limited public transport services, especially on Sundays, there is more exhaustion from difficult commutes and two or three 12 hour shifts across a weekend rather than doing 1 X 24 hour shift with a better work life balance. We find that doctors try to re-organise their rotas to do this but we advise them that the EWTD does not allow this.

Doctors in craft specialties have fewer cases in their log books and less experience before gaining the certificate of specialty training than before. Perhaps they should be allowed to be with their consultant in an apprenticeship observer role to enable further exposure without being the provider of care to a patient beyond their…allowance.

Doctors in post graduate training should not feel that they are not allowed in the hospital beyond 48 hours. They should feel enabled to be in a learning environment—

and be able to—

“develop as a professional. Patient care is a 24 hour activity and EWTD has led to fewer doctors being in the hospital out of normal, working hours. This is inconsistent with activity in hospitals going up all the time, at all times.”

That is the formal response from my wonderful hospital. There are many other things that they would not want to put down on paper or read out in the Chamber, and I can understand why. From talking to many doctors, both training doctors and doctors with more experience, we know that what is actually being said is more serious than what is being said officially. It is much more stressful for many doctors to work in those patterns.

One close friend of mine who is a young doctor says that in the old days—I am sure we all remember the old days—a firm of doctors would be responsible for their patients pretty much all week, and on call on top of that. That meant good continuity of care that benefited patients and contributed to training. Doctors could see whether or not their treatment had worked. Now they have lots of zero days that interrupt the working week and mean that the teams are smaller day to day. It is rare for more than two to work together. That means that patients are seen by different people every day who do not know their case. They have repeatedly to answer the same questions, and getting things done takes longer because they do not know who has actually asked for something, perhaps earlier that day.

[Dan Byles (North Warwickshire) (Con)]

Quite rightly, hon. Members are very concerned about the impact on patient care, but is the hon. Lady aware of any work that has considered the financial cost of this regulation to the NHS?

[Kate Hoey]

We do not have to be GCSE standard—I have more than GCSEs, incidentally—to work out that it clearly costs more, because more and more locums have to come in, and extra people have to come in from abroad. Like agency nursing, that costs much, much more. I can never understand why, instead of bringing in agency nurses and paying more, we cannot have more nurses. The cost is a huge factor and it is going to get worse. With reductions, people will have to be more careful, and this will be a big issue. It is not good for doctor training—they cannot do their job properly and it is more stressful.

Nobody will admit that there is a huge amount of fiddling of figures going on. The only way that people in charge know that they are perhaps going to save people’s lives is to fiddle the figures and allow people to work outside the law. That is absolutely not trying to encourage that kind of behaviour in the NHS. I do not blame people for doing that, but it is a direct result of how we have got ourselves into this situation.

The Government are apparently saying that they are working urgently with Europe. I do not want to turn this into a debate on Europe. I think most hon. Members know my views on that. No matter how hard or urgently the Minister is working in Europe—I know what a good Minister he is—Europe’s idea of urgency and ours are a long way apart, so we have to find another way. Ultimately, as the hon. Member for North Antrim (Ian Paisley) said, this is about getting to the root of the issue. We live in an independent country and what we do in our hospitals and our NHS service should not be decided by bureaucrats in Brussels, with Governments misguidedly signing up to all sorts of things that the people of this country have never had any say in.

I will go back to what I say in every debate on Europe: it is time for the people of this country to have a say on what they feel their relationship with Europe is all about. An important part of doing that is to get the European working time directive changed, so that we can honestly say that we parliamentarians have done our bit to ensure that patient safety is improved and made better than it will be if this continues.

NHS Future Forum

Baroness Hoey Excerpts

Tuesday 14th June 2011 Commons Chamber

[Mr Lansley]

I am grateful to my hon. Friend for his kind remarks, but I have to tell him that I am not looking to achieve anything in terms of reputation; I just want a positive outcome for the NHS. I have said before that this is not about me; it is about achieving for the NHS the opportunity to deliver better services for patients. That is all I am interested in.

The proposals on public and patient involvement illustrate what we needed to do—and will now do in response to the Future Forum—as many people wanted to see set out in detail in the legislation how patient and public involvement would work in the respective NHS bodies. The legislation had set out the fact that these bodies existed, but the detail was not prescribed. There is always a balance to be struck in legislation between the degree of prescription and the degree of freedom. Clearly, through engagement with the NHS, we have approval for putting much more of the detail into the Bill, now that it is clear that it will engage patients and the public.

[Kate Hoey (Vauxhall) (Lab)]

Along with the vast majority of the public, I welcome most of the changes announced today. I always welcome U-turns when they bring about the right thing. I am very concerned, however, that the bureaucracy that will be around after all these changes have gone through could be worse than what we have at the moment. I would genuinely like to be reassured on that point.

[Mr Lansley]

I am grateful to the hon. Lady for her support for the majority of the recommendations. The bureaucracy will reduce in the NHS as a consequence of the changes for one very simple reason—because we are shifting the ownership of commissioning and the responsibility for the design and delivery of services from what is essentially a distant managerial organisation into one that is locked into the clinical decision making of doctors and nurses across the service. Let us be clear: this is about delivering benefit to patients by empowering the doctors and nurses who care for them. That in itself will cut the bureaucracy.