Epilepsy

Valerie Vaz Excerpts

Thursday 26th February 2015 Commons Chamber

[Valerie Vaz (Walsall South) (Lab)]

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

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

[Laura Sandys]

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

[Valerie Vaz]

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

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

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

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

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

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

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

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

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

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

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

[Several hon. Members]

rose—

Oral Answers to Questions

Valerie Vaz Excerpts

Tuesday 24th February 2015 Commons Chamber

[Dr Poulter]

My right hon. Friend asks an important question. We can of course support the existing model, and the innovation that comes with GPs being small businesses, and that is exactly what we are doing with the £1 billion investment fund for GP infrastructure and technology. We are supporting those GPs as small businesses to develop better patient services.

[Valerie Vaz (Walsall South) (Lab)]

On what is his last outing, will the Minister tell us how many GPs, in addition to those who have retired, have left the profession and how many have gone to work abroad?

[Dr Poulter]

It has always been the case—it was certainly the case among many of my medical contemporaries—that many people from our NHS go and work overseas for some time. They often come back to the NHS, bringing broader experience and skills. As I outlined earlier, there are now 1,000 more GPs working and training in our NHS than there were five years ago.

Francis Report: Update and Response

Valerie Vaz Excerpts

Wednesday 11th February 2015 Commons Chamber

[Mr Hunt]

The hon. Gentleman makes an important point, but I hope I can reassure him, because NICE has published guidelines on safe staffing levels, although they are different for different parts of a hospital: in intensive care, it is 1:1; for less severe illnesses, it is one nurse to eight patients; and in other parts of a hospital, it is one nurse to four patients. Those are all published, and I hope they will help whistleblowers in Cornwall and elsewhere.

[Valerie Vaz (Walsall South) (Lab)]

What support will the Secretary of State give to trusts to ensure that safe staffing levels are implemented, given that they might need extra resources?

[Mr Hunt]

We have protected—indeed increased—the NHS budget in real terms at the time of the biggest financial crisis since the second world war, so I think the Government have done what they can to make resources available. However, improving care is not always about money, and some hospitals manage to staff their wards safely and achieve financial balance. In fact, hospitals that practise safe care tend to be in a better financial position than ones that do not, so safe care and good finances actually go together.

NHS Major Incidents

Valerie Vaz Excerpts

Wednesday 28th January 2015 Commons Chamber

[Mr Hunt]

My hon. Friend is absolutely right. I have spoken to the chief executive of the hospital, and I must say that she and her staff are doing a good job in turning around a very difficult situation. What they want is support. We have issued sensible guidance that tells hospitals that if they declare a major incident, they must take account of the impact on the rest of their local health economy. A responsible Opposition would support such guidance, and not to try to turn it into a political football.

[Valerie Vaz (Walsall South) (Lab)]

The Manor hospital had to declare a major incident due to inordinate pressure from the closure of Stafford A and E. That is not a local issue, but a national one. When will the Secretary of State provide the hospital with the extra money to absorb the closure of Stafford A and E?

[Mr Hunt]

I can reassure the hon. Lady that we have provided a huge amount of extra money to deal with the problems in the wake of what happened at the former Mid Staffs Trust. We are continuing to give every support we can to Walsall and Stoke and other trusts. We have more doctors and more nurses and major changes are happening. The problem in Mid Staffs went on for four long years, and we do not want to wait that time before sorting out the problems.

NHS Specialised Services

Valerie Vaz Excerpts

Thursday 15th January 2015 Westminster Hall

[Valerie Vaz (Walsall South) (Lab)]

May I be the next person to congratulate you on your elevation, Sir David? You have always been very kind to me since I entered Parliament in 2010, so I think it is well deserved.

I thank the hon. Member for St Austell and Newquay (Stephen Gilbert) for bringing a very timely debate to the Chamber. He has given us all a shove to make us realise how important this issue is. We have all had to concentrate on, and speak to our constituents about, what is going on. I also want to say something about the two Front-Bench spokespersons, who are probably two of the nicest Ministers and shadow Ministers. It is, of course, always a pleasure to follow my hon. Friend the Member for Bristol East (Kerry McCarthy).

Every hon. Member making a speech here today speaks on behalf of people who suffer from rare conditions because those people cannot do so themselves. They have complex conditions; by their very nature, they are not run of the mill. They require highly specialised and very skilled clinical responses. Many other hon. Members have concentrated on specific areas. As a member of the all-party group on epilepsy, which also considers related conditions, I shall focus on that. Epilepsy encompasses so many variations, and there are a lot of unknowns about these conditions. Sometimes epilepsy is a forgotten condition because there are no shops on the high street to remind us of how many people—children and adults—suffer from it.

The document from Epilepsy Action’s trawl around all the CCGs was put on my desk and it explains why the debate is so important. I am not sure whether the Minister has seen it. It is entitled “Epilepsy in England: The local picture”. It is quite alarming. I shall highlight just three of the major issues. Epilepsy Action says that only 10% of CCGs have a written needs assessment for people with epilepsy; just three out of 140 health and wellbeing boards are making plans for people with epilepsy; and 78% of CCGs have not developed, or do not intend to develop, a needs assessment for people with epilepsy.

According to epilepsy charities, there are also problems with the current national service specification for adult specialised neuroscience services. The problem is that it is an interim document. It was produced in 2013 and requires updating. More importantly, it does not specify which parts of epilepsy services are specialised and which are not. There seems to be a lack of accountability between CCGs and NHS England as to which are neurological services. The CCGs are interpreting, wrongly, that they have no responsibility for some neurological services but they have for others. That is why this debate is so important. How does the Minister intend to deal with that discrepancy? Will the specification be updated, and can he review that before he rolls out the programme?

The situation makes a mockery of my final point, which is about the tariff. NHS England and Monitor will bring in marginal rates of 50% for specialised services above the stated baseline. That, in effect, means that access may be rationed. Worse still, CCGs, if they underspend on their budget, can keep that money. That means that there is a perverse incentive not to commission the more expensive rather than the less costly procedures. Let us think about the kind of procedures required for epilepsy. Brain surgery is complex and highly skilled, and sometimes it is the only option for people with the condition.

I am not sure why specialised commissioning needs to change. I do not know whether the Minister is aware of the survey that the Specialised Healthcare Alliance carried out among patient organisations, expert clinicians and the industry in late 2014. It says that 90% of respondents want their service as part of specialised commissioning, not co-commissioning, and 82% do not want any change. I urge the Minister to listen to those patients and to those affected.

--- Later in debate ---

[Norman Lamb]

My hon. Friend makes a legitimate challenge. These anomalies have not been addressed so far, but they need to be at some point. I do not seek to deny his point.

The hon. Member for Mitcham and Morden (Siobhain McDonagh) highlighted the work of Headway, which provides incredible support for people with brain injuries and their families. She mentioned the helpline and the emergency fund, which will be of enormous help to families in the incredibly difficult circumstances they face.

The hon. Member for Bristol East mentioned the Cystic Fibrosis Trust—another amazing patient organisation that does extraordinarily important work. She talked about the importance of equity of access, and it is incredibly important that that principle is maintained in any changes that take place. We do not want to return to the postcode lottery that existed in the past. Again, I am happy to try to provide responses to the questions she asked at the end of her speech.

The hon. Member for Walsall South (Valerie Vaz) was incredibly generous in her remarks about the shadow Minister, and I feel the same about him—let us be blunt about that. I appreciate her kind remarks about me—indeed, the feeling is entirely mutual. She made some really important points about epilepsy and Epilepsy Action. She highlighted concerns about many CCGs and health and wellbeing boards not yet engaging fully in work on epilepsy. That critical issue goes beyond this debate, but I completely take the point that there needs to be a lot more understanding and recognition of the importance of good epilepsy care that follows good practice and addresses the awful problem of so many people losing their lives unnecessarily to this condition.

[Valerie Vaz]

The issue is actually within the scope of the debate. We are talking about co-commissioning, but CCGs are not ready.

[Norman Lamb]

I totally accept the point. Again, I hope to reassure the hon. Lady.

The hon. Member for Luton North (Kelvin Hopkins) referred to robotic assistive surgery. I do not want to give him any particular hope, but it is always possible for new procedures to be added to the list of those that come within specialised commissioning. The prescribed specialist services advisory group keeps the list under review. Just as there are proposals to remove procedures, there is always the possibility, if the case is made and the four conditions that need to be taken into account are met, that additional areas can be included.

Oral Answers to Questions

Valerie Vaz Excerpts

Tuesday 13th January 2015 Commons Chamber

[Mr Hunt]

These things are decided independently by NHS England, which made the decision on the basis of which CCGs were most off their target allocation and on social deprivation and the number of older people. I remind the hon. Gentleman that there are many older and vulnerable people in the south, too, and they need a fair settlement from the NHS. That is why the decision was made.

[Valerie Vaz (Walsall South) (Lab)]

The College of Emergency Medicine says that the extra money the Secretary of State has given is not reaching A and E. What steps is he taking to ensure that the money does not stay with the CCGs, but actually goes into A and E?

[Mr Hunt]

I have had a number of discussions with the College of Emergency Medicine and what it actually says is that the system is working pretty well—[Interruption.] Well, that is what the College of Emergency Medicine says. The country’s A and E doctors welcome the fact that with the winter pressures money, there are now 800 more doctors and 4,700 more nurses, but we always want to make sure that the money is getting through as quickly as possible, so if the hon. Lady has any particular examples, I would be happy to look into them.

A and E and Ambulance Services

Valerie Vaz Excerpts

Thursday 18th December 2014 Commons Chamber

[Mr Hunt]

I can confirm that the Government’s policy is to root out poor care wherever we find it, not to cover it up and conceal it for party political purposes.

[Valerie Vaz (Walsall South) (Lab)]

The College of Emergency Medicine gave the Secretary of State a 10-point plan in 2013. Will he say which of those 10 points he has enacted?

[Mr Hunt]

We have enacted, or started to enact, every single one of them. Some of them take a bit longer—the contracts for A and E consultants, for example, which we want to ensure are attractive enough to encourage people to want to become A and E consultants. I am pleased to say that we have made some progress on that and are now getting the recruits coming into A and E that we want to see. Other things are starting to happen this winter—more co-location of GP services at A and E front doors and better discharging procedures from hospitals. We have been working very closely with the College of Emergency Medicine, which has been a great help to us in devising these winter plans.

Oral Answers to Questions

Valerie Vaz Excerpts

Tuesday 25th November 2014 Commons Chamber

[Mr Hunt]

I thank my hon. Friend for raising that point. The last Labour Government did leave us with one of the lowest cancer survival rates in western Europe, which is one of the reasons why we introduced the CDF. Unfortunately, the current Labour Government in Wales are continuing with those policies, which is why 6,500 Welsh cancer patients were admitted for treatment in English hospitals last year. [Official Report, 12 January 2015, Vol. 590, c. 5-6MC.]

[Valerie Vaz (Walsall South) (Lab)]

So will the Secretary of State then publish the assessment of the CDF by the chemotherapy intelligence unit before 7 May 2015?

[Mr Hunt]

We are, on the NHS, the most transparent Government in history, and I can see no reason why we would not publish that. We are very proud of what the CDF has achieved. We are very proud that the level of cancer diagnoses has increased by more than 50% compared with what it was under the previous Labour Government, and so we are finally starting to win the battle against cancer.

National Health Service (Amended Duties and Powers) Bill

Valerie Vaz Excerpts

Friday 21st November 2014 Commons Chamber

[John Healey]

My hon. Friend has been a strong champion of the NHS and followed this issue from day one of this Parliament. To answer directly his question of what could be more succinct and clear, I suspect that when we hear from the new Member for UKIP, the hon. Member for Rochester and Strood (Mark Reckless) or his colleague, the hon. Member for Clacton (Douglas Carswell)—given some of the things that they have argued should be the basis of the NHS in future—they will make the vision of the right hon. Member for South West Surrey look positively UKIP-lite.

This Bill is essential because it starts to correct the three fundamental flaws, brought about by the reorganisation legislation, that are now driving the NHS. We could call them the three Cs—cost, complexity and competition.

On cost, the scale of the reorganisation was simply huge. As the chief executive of the NHS said at the time, it was

“beyond anything that anybody from the public or private sector has witnessed”.

The cost of the waste has been huge. We reckoned beforehand that it was about £2 billion; we now reckon £3 billion. What is clear is that getting on for £1 billion has been paid out in redundancies, much of which was to staff who were paid off and then re-hired by our NHS.

[Valerie Vaz (Walsall South) (Lab)]

Could my right hon. Friend say what steps were taken to publish the risk assessment during the passage of the Health and Social Care Bill?

[John Healey]

I did not want to open up all the old arguments that we fought in 2010-11, though it was extraordinary to see the extreme lengths to which the Government went—seen before only on matters of military information—to stop the disclosure of the risk register about the potential impact and likely consequences of their policy. My hon. Friend was a great supporter of mine in trying to use the Freedom of Information Act to allow the public and this House to see the terms of what the Government knew could happen to the NHS if they passed the legislation.

My second C is complexity. NHS services are now so much harder to plan and so much harder to hold to account because of the changes the Government have made. We saw new national quangos responsible for tens of billions of pounds of spending of public money in each and every one of our local areas in England. The commissioning role, which was previously undertaken by one body, the primary care trust, is now fragmented with at least five different bodies trying to do the same job.

On the third C, competition, the Secretary of State has his foot lightly on the accelerator of privatisation for now, but let us make no mistake, if the Tories win the next election, he will press it hard down to the floor immediately afterwards. Even though they are soft-pedalling on the privatisation that their Act put in place, we have seen in the 18 months since it came into force 131 contracts won by companies such as Care UK, Virgin Care and BUPA. According to the NHS Support Federation, that is already valued at £2.6 billion. At that win rate, the contracts already currently advertised will mean another £6.6 billion in the private sector—getting on for 10% of our NHS run by private companies in private hands.

--- Later in debate ---

[Barbara Keeley]

I thank the hon. Gentleman for that comment, but the point is that Macmillan Cancer Support is using money fundraised by the public in ways that I do not think the public would approve of. That was the key thing we explored. It is not at all clear, if we look at the Macmillan website, how it is using approaching £1 million of the public’s money, donated on that basis.

[Valerie Vaz]

My hon. Friend mentions conflicts of interest. Is she aware that one of the companies bidding for the privatisation of cancer services is UnitedHealth Group, which was advised by the chief executive of NHS England?

[Barbara Keeley]

Indeed. Now that the shortlist for bidding has been announced for end-of-life care, we find that five of the shortlisted bidders are private companies, with only two NHS trusts on the list. For cancer care, there are three private companies and two NHS trusts. Given the seemingly headlong drive for change we found in those commissioning this large and risky contract, a great number of questions were left unanswered. For instance, despite the key role that GPs play in end-of-life care for patients choosing to die at home, the prime provider of end-of-life care will not have control over the actions of the GPs involved in that care unless a specific contract is drawn up and GPs are paid for extra tasks.

The contracts for cancer and end-of-life care are to be placed in early summer 2015, and I invite anybody with an interest in this to review the evidence and, in particular, the unanswered questions in the session the Health Committee held on 14 October. I have yet to find assurances in the evidence I have heard that the profit motive of private providers can be squared with the objective of improving cancer care and end-of-life care for patients.

Oral Answers to Questions

Valerie Vaz Excerpts

Tuesday 21st October 2014 Commons Chamber

[Jane Ellison]

My hon. Friend is right to highlight this important issue. As he knows, the Department is negotiating with the manufacturer to purchase the vaccine at a cost-effective price, and he will understand that we need to ensure that NHS funds are used as effectively as possible. We are keen to see a positive conclusion to the negotiations as soon as possible so that plans for the Men B immunisation programme can be finalised.

[Valerie Vaz (Walsall South) (Lab)]

Will the Secretary of State explain why NHS England has entered into a contract with a company based in Kent to provide GP services, when my constituents have just seen a string of locum GPs at a higher cost to the NHS?

[Mr Jeremy Hunt]

Wherever we can avoid it, we do not want to use locum GPs or nurses or agency doctors, because they are much more expensive—our spend on that is far too high—but sometimes when there are issues of patient safety we need a quick solution. That is what has happened in response to the Francis report: as well as recruiting 5,000 additional nurses on a permanent basis, we are using extra agency nurses. However, we hope to bring those numbers down.