Cystic Fibrosis

Kerry McCarthy Excerpts

Thursday 10th April 2014 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

Thank you, Madam Deputy Speaker, for this opportunity to discuss an issue that is important not just to me personally and to my family, but to those constituents who have families or friends with cystic fibrosis and have written to me recently in support of the Cystic Fibrosis campaign. I thank also the Cystic Fibrosis Trust and the Bristol Adult Cystic Fibrosis Centre for their assistance in preparing for today’s debate, and those with whom I trekked across the desert in Jordan back in February to raise funds for the Cystic Fibrosis Trust. I am so grateful to the many people who sponsored me on that trek and, in particular, to those constituents, many of whom were not known to me personally, who were very generous with their contributions.

I chose to join the trek because I have a nine-year-old niece, Maisie, who has cystic fibrosis. Almost everyone who went on that trek to Petra had a relative, spouse, partner or friend with CF. so as well as being a fantastic if physically challenging experience, it was also useful for me, as we went through the mountains and the desert, to speak to people about their experience of dealing with family and friends with CF.

CF is an inherited disease that affects more than 10,000 people in the UK. One in 25 people carries the CF gene, and if both parents are carriers there is a 25% chance that their child will have CF—so one in 2,500 babies born in the UK has cystic fibrosis. My niece was diagnosed on Christmas eve when she was only a few weeks old. She had been losing weight and her parents were worried so they took her into hospital. But, thankfully, since 2007 newborn babies have been routinely screened, and that is very welcome.

CF is a genetic deficit that causes the production of thick mucus which predominantly affects the lungs and digestive system. The symptoms include a persistent cough, breathing difficulties and repeated chest infections. It also affects the pancreas, meaning that fatty foods in particular and fat-soluble vitamins are not digested or absorbed properly, causing malnutrition, poor growth and diarrhoea. This means that people with CF generally need between 20% to 50% more calories than average, and one third of them go on to develop CF-related diabetes.

Treatment varies because the condition can vary from person to person. Some people are not diagnosed and do not realise they have the symptoms of CF until they are an adult, as was the case with one lad on the trek with me. He was in his mid-20s and had been diagnosed at 18, so he had a milder form of the disease without the pancreatic symptoms. Treatment can vary according to how severe a person’s condition is, but it usually involves daily time-consuming physiotherapy, an oral nebuliser and, occasionally, intravenous antibiotics and having to take enzyme tablets when food is swallowed.

Patients are susceptible to cross-infection, which sadly means it is not a good idea for people with CF to come into contact with each other. That is where online forums have become valuable, because people with cystic fibrosis can now talk to each other about their condition. I want to flag up the Twitter account @CFAware, which I have only just come across. It retweets people who have contacted it with anecdotes about how cystic fibrosis affects their lives and about their treatment. It has been really valuable to me in informing me about the illness.

Cystic fibrosis used to be known as a childhood disease because life expectancy was so short. When the Cystic Fibrosis Trust was founded in 1964, a child born with CF was not expected to live beyond the age of five. Advances now mean that half the people with CF are expected to live beyond 41 years, and the life expectancy continues to rise—indeed, I was told the other day that a child born today with CF could expect to live into his or her 50s. That progress is, of course, very welcome, but it has implications for people with CF and their families, and for treatment and public policy, which I want to focus on this afternoon.

One recent breakthrough was the development of ivacaftor—the brand name is Kalydeco—a tablet treatment that addresses the genetic causes of CF, but that is valuable only for those with the G551D mutation, who comprise just 4% of CF patients. For them, the fact that this drug is now available reduces CF to a manageable lifelong condition—it is something they can live with, rather than a deteriorating condition—so the confirmation that this drug would be funded in England from January last year was an unimaginable relief. The drug demonstrates why investment in research and drug development, and in gene therapy, is so crucial. If a drug were found that could help the remaining 96%, the cost of providing it could be prohibitive, but of course that should not prevent our carrying out the research and continually trying to find better treatment, better genetic experiments and, ultimately, a cure for CF.

In the more immediate term, patients need a focus on the care and support available to them. Bristol is fortunate to have both a specialist paediatric centre at Bristol children’s hospital and, next door, an adult CF centre at the Bristol Royal infirmary, where I met staff and patients when I visited last week. It has a multi-disciplinary team comprising consultants, nurses, dieticians, physiotherapists, pharmacists, psychologists and a social worker. It was clear from my visit that each and every member makes a vital contribution to the treatment and well-being of CF patients there. The dieticians’ input is crucial in trying to help them maintain a healthy weight and deal with the added complication of diabetes. Psychologists are there to help with the psychological impact of having a life-limiting disease or the trauma of waiting for a lung transplant—that is an issue I will return to later. The medics I met also emphasised the importance of the social worker’s role.

The team also helps patients and families cope with the transition from paediatric to adult services at the age of 18. That comes at a time when not only are teenagers struggling with all the usual things that teenagers struggle with and they are perhaps making that transition into managing the condition themselves—by carrying out their own physiotherapy and administering drugs themselves, rather than having their parents do it for them—but their condition is likely to start deteriorating. Young adulthood is often the time when there is a dramatic decline in the health of CF sufferers, so having expert specialists, as well as exercise facilities and in-patient beds, at the specialist unit in Bristol, in a dedicated space for CF, which stops the risk of cross-infection, too—patients have their own rooms—is really important.

It is important to remember that many patients are trying to balance employment with their treatment: 70% of adults with CF who completed an employment questionnaire for the CF Trust were in work or education. Many of these patients are trying to administer treatment, such as IVs, at home and have to struggle with the equipment; they are trying to manage the costs of travelling to the specialist centre; and they may well be trying to apply for the assistance to which they are entitled from the Department for Work and Pensions. Indeed, the financial pressures are considerable, and one consequence of CF having been a “childhood disease” is that it was not included in the prescription charge exemptions, so patients now reaching adulthood face significant bills for their cocktail of medication. As we know, the prescription charge increased last week to £8.05.

[Sir Bob Russell (Colchester) (LD)]

I hope that when the Minister responds she will explain why successive Governments refused to acknowledge the very strong arguments that the hon. Lady has made about how the disease was once a childhood condition whereby people never made it beyond being teenagers but now people make it to adulthood and they are having to pay prescription charges—if they are in employment—to stay alive. People who abuse their body and become drug addicts receive state funding, but people who have been served by mother nature in this way do not get the help. The Government should give that help.

[Kerry McCarthy]

I thank the hon. Gentleman for his intervention. I know that he has campaigned on this issue for many years. To people who think that early-day motions are a magic bullet that will solve things overnight, I point to the hon. Gentleman, who managed to get an early-day motion calling for the removal of prescription charges for cystic fibrosis patients. I think that his early-day motion has been No. 1 on the list for many, many years, but it has not yet managed to progress. He also had a debate on the issue last year. I sometimes use him as an example of how early-day motions do not automatically mean that the Government will sit up and listen, but I hope that the Minister will listen today and hear our plea.

The previous Prime Minister, my right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown), recognised this issue, and his Government committed to phasing out prescription charges for people with long-term health conditions, but we did not manage to do it before the 2010 general election.

Some people with cystic fibrosis will be forced to make the difficult decision to give up work, but research conducted last year by the Cystic Fibrosis Trust with Parkinson’s UK, the Multiple Sclerosis Society and the National Rheumatoid Arthritis Society reported that Atos found 45% of people with these progressive conditions fit to work. Obviously, it has now been belatedly acknowledged that the assessments carried out by Atos were far too unreliable. Most worryingly, some people with cystic fibrosis were given “prognosis reports” of when they would recover from the illness—an illness from which it is impossible to recover.

Critically, welfare reforms may increase the barriers to getting to work and hospital appointments—not least the new personal independence payment and the 20 metre mobility limit. A survey of people with CF found that more than a third would no longer be able to work if they were not awarded the higher rate of mobility under the new PIP, while 90% said they would find it difficult to access hospital appointments. In a survey for the Cystic Fibrosis Trust, a third said that they would not be able to attend hospital appointments. The trust also warns that patients fear isolation and loss of independence, which would affect their mental health.

When I visited the Bristol adult cystic fibrosis centre last week, it was explained to me how the trust and the centre fundraise to help the service and the patients. For instance, they buy more nebulisers to lend to patients. The ordinary nebulisers are huge and cumbersome, but the nice neat little ones are far more expensive. The trust and centre want to help patients manage their condition with the least amount of inconvenience. They fundraise to buy the smaller nebulisers. They also buy physio equipment, because it is really important for CF patients to undertake exercise to loosen up the mucus on their lungs. They buy fridges for patients’ medication and desks for their rooms—as I said earlier, patients need their own rooms to avoid cross-contamination.

The Bristol centre is clearly making an invaluable difference to its patients’ lives, but it has a growing patients list, which is due in part to the very welcome increases in life expectancy. I understand that Bristol’s patient numbers are increasing in line with the national average—by around 10% each year—and the patient case load has doubled over the past six years to around 200. I think the Manchester centre has about 600 patients and is the largest in the country.

With the Bristol centre, the transfer of patients from further afield, such as from Taunton and Swindon, has contributed to the growth in numbers. This year, it is also taking on patients from Cheltenham and Bath.

Patients are often admitted for a course of intravenous antibiotics, which they will generally need about three times a year, with the antibiotics being administered about three times a day for a couple of weeks. Some patients can self-administer at home, but that is not always appropriate or safe, depending on their living conditions and how ill they are. Sometimes it may just be that they have not been monitored by the team for a while, so they will be admitted to the centre. I met a young woman who had just started work. She had an understanding employer. She had been in her new job for two weeks and then decided that she needed to go into hospital to have the intravenous antibiotics. She felt much safer there than administering a course of treatment at home, which was her normal way of doing things. The condition clearly requires considerate employers.

It seems that hospital admissions at specialist CF centres are becoming increasingly difficult to plan for and more prone to cancellation because the units cannot guarantee a bed will be available. It seems that, particularly in winter months, the specialist beds also come under pressure from other departments, which have a shortage of beds. Ordinary patients may be put in a CF unit, and the CF patients cannot get the treatment that they need. In Bristol, the annual number of in-patient “bed days” required by patients for their IV antibiotics has increased from just over 500 in 2005 to nearly 2,500. That is due to the number of patients, and not because the length of stay is increasing.

Over the past few years in particular, there has been a steeper rise in the number of bed days at home, which is now at more than 3,500 annually. The unit is trying to facilitate more self-care at home and has developed an outreach service so that patients do not always have to travel to Bristol. It also tries to offer community liaison and health care at home, for example to help with IVs, and is developing innovative ways to help patients, including through an agreement with BUPA to deliver supplies to the homes. There can be a huge amount of equipment and pills and so on, and patients who have to use public transport to get to the hospital, perhaps not feeling very well as they are travelling, do not want to have to carry huge amounts of drugs and equipment around with them. That delivery service is proving very useful. Staffing and resources, however, mean that the centre has limited capacity for outreach and community services.

Importantly, the University Hospitals Bristol NHS Trust is working with the centre and has increased funding for specialist staff but, more generally, the Cystic Fibrosis Trust told me that specialist CF centres around the UK are reporting that resources, personnel and space provision are inadequate and warns that in light of the increasing patient numbers nationally, the lack of capacity for in-patient beds, combined with a lack of funding for out-patient staff, threatens to curtail the clear progress made over the past few decades. I would therefore be grateful if the Minister could update us on the Department of Health’s plans to ensure that CF services are equipped to keep up with increasing patient numbers and the complexity of the condition and assure me that she will work with the Cystic Fibrosis Trust, the specialist centres and their expert staff. Will she also consider the issue of co-ordination between trusts? For example, CF patients who phone an ambulance will often not be taken to the specialist centres even though their consultants recommend it.

Some patients will be assessed and referred for a lung transplant and, as the Minister will be aware, last month the Cystic Fibrosis Trust launched its “Hope for more” campaign. Although a lung transplant is not appropriate for everyone with CF and does not cure it, it can mean the priceless gift of a few more years for the patient and their family. Tragically, though, one in three people with CF on the lung transplant waiting list will die before they can receive one, so the Cystic Fibrosis Trust is campaigning to maximise the use of organs and increase the number of organs available for transplant.

One tragic case was that of Kerry Thorpe, a very brave young woman who became the face of the organ donor campaign. She died only a few weeks ago at the end of March at the age of 23, because new lungs could not be found for her. She spent seven years on the waiting list. Today, I was sent an account from the Daily Record of another 23-year-old, Lynette Armitage, who had a lung transplant in December in an eight-and-a-half-hour operation. She asked surgeons whether she could have a photo of her old lungs when they removed them, but they told her that the lungs had completely disintegrated when they had taken them out. They were only held together by her rib cage and the surgeons said that if she had not had a transplant within the next two weeks, she would have died. The lungs got to her just in time. It might be that she lives for another seven years or so, which is the average, but some people who have had transplants can live into their 50s or 60s. She is talking about having a normal life, having children and looking forward to going to T in the Park this year. That just shows what a difference can be made if lungs can be found: two 23-year-olds with very different outcomes.

There are a number of ways to reduce the length of time people are waiting and, critically, to reduce the number of deaths. That includes increasing organ donation rates and promoting more public discussion of organ donation. Less than a third of donors are registered, so it is not necessarily an obstacle if someone is not on the register. The Cystic Fibrosis Trust reports that the UK has one of the highest rates of family refusal in the western world. I am not suggesting that this is an easy decision for bereaved families to make during such a difficult and emotionally charged period, particularly if the family member has died suddenly, but it is nevertheless an indication of the need to focus on consent as well as registration and to ensure that more people understand what an incredible and generous gift they can give to other people if they sign up to be donors.

The organ donation taskforce led to a 50% increase in the number of deceased donors and a 30.5% increase in transplants in the five years to 2013. That was important progress, but I am sure the Minister will agree there is still more to be done. I would be grateful if she could update us on the “Taking Organ Transplantation to 2020” strategy and the latest assessment of the case for an opt-out system. I know that Wales is moving to a system of presumed consent next year.

As the Cystic Fibrosis Trust has highlighted, it is not only a case of increasing donor rates, as significant numbers of donor lungs are not used, despite the next of kin giving their consent. Lungs from fewer than 25% of donors after brain death are utilised in transplantation. Medical innovation means that more lungs could be used, and the trust has called for more transplant surgeons to be trained in downsizing donor lungs. It has also funded a study at the university of Newcastle on ex-vivo lung perfusion, a technique for the assessment and potential repair of sub-optimal lungs. That was explained to me as a service where damaged lungs are reconditioned so that they are fit for use in transplants. I urge the Minister to consider the results of that study, and whether such techniques could increase the number of suitable donor organs.

In recommending the development of a national lung allocation system, the report focuses on a concern amongst the cystic fibrosis community about the equity of lung allocation, and whether they go to those most in need, irrespective of where the person lives. I am aware that NHSBT has developed a new super-urgent group, separate from the main waiting list, but the Cystic Fibrosis Trust emphasises that that is unlikely to have a significant impact on people with cystic fibrosis waiting for a transplant. It also highlights the evidence from the USA, where the introduction of the lung allocation system led to an increase in the number of transplants and a significant reduction in the number of people with cystic fibrosis dying while on the waiting list.

[Kate Green (Stretford and Urmston) (Lab)]

I am grateful to my hon. Friend for raising the issue of allocation of lungs for transplant. In the north-west of England we have poor levels of transplant. People wait longer and are more likely to die on the waiting list. Does she agree that it is important that the Minister presses for the modelling, which I understand is being carried out, on the impact of a national allocation scheme to be given great attention and accelerated if possible, so that we can have the evidence on the benefits of such a scheme in this country as quickly as possible?

[Kerry McCarthy]

I agree entirely with my hon. Friend. As I have said, it makes such a difference if more people come forward as donors, not just for lung transplants but for many other types of donation as well, from blood through to other organs. I urge the Minister to give this the utmost priority, because, as we have said, it can make such a difference to people’s lives.

The Department of Health has advised that the most recent analysis showed no significant difference in allocation across UK lung transplant centres. But the Cystic Fibrosis Trust clearly believes that an improved allocation system could address the shocking fact that one in three cystic fibrosis patients die before they get to the top of the waiting list. So I ask the Minister to review this with NHSBT, and consider the evidence from the Cystic Fibrosis Trust. It would also be helpful if she could provide more information on the current review by the cardiothoracic organs advisory group, and say whether it is considering a national allocation system, as referred to by my hon. Friend, or consulting stakeholders such as the Cystic Fibrosis Trust and specialist centres, and when it is likely to report.

The “Hope for more” report also highlights that 62% of survey respondents reported that psychosocial support during the whole transplant process is insufficient, and concludes:

“The demand for services that assist the family and individuals in coping with cystic fibrosis is drastically underestimated”.

In response to a parliamentary question that I tabled, the Minister explained that decisions on psychosocial support are a matter for clinicians and commissioners, but I would urge further consideration of the report’s findings and how the Department of Health can help to improve provision and ensure that clinicians have the resources that they need, working with commissioners to address gaps in information, support and psychosocial services for patients waiting for a transplant and post-operative.

It is clear that the specialist centres, working with the Cystic Fibrosis Trust, are making an incalculable difference to their patients’ lives. The trust is putting real money into the provision of services for cystic fibrosis patients. In 2012-13, the trust contributed more than £1.6 million to research projects, and more than £1.1 million to clinical care. It also provides a helpline that takes more than 3,000 calls every year, and it is able to provide limited welfare grants to people with cystic fibrosis and their families who are, understandably, struggling with the impact the condition can have on their lives.

I congratulate the Cystic Fibrosis Trust on its work and all those people that I met at the cystic fibrosis centre in Bristol, who were so dedicated and keen to get across to me the fact that with more resources they would be able to do an even better job in coping with the increased number of patients. I hope that the Minister takes that on board.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I congratulate the hon. Member for Bristol East (Kerry McCarthy) on securing this debate. She made a wide-ranging speech demonstrating a very deep knowledge of this subject. She alluded to her own family connection to this condition. Obviously, I convey my best wishes to her constituents, particularly to her family and especially to her niece, who is, as she described, suffering from the condition.

I commend the hon. Lady’s recent achievement in raising funds for the Cystic Fibrosis Trust. That is an excellent achievement for an excellent charity; she is right to be generous in paying tribute to it. I am sure she will be interested to know that in recent weeks many Members of Parliament have contacted me in support of the trust’s current campaign on behalf of the 10,000 or so people in the UK who battle with the everyday challenge, which she so eloquently described, of living with cystic fibrosis.

Let me take this opportunity, as I like to do, to pay tribute to those who work in our NHS and their dedication, determination and commitment to provide a first-class care service to all patients, not least CF patients. I pay tribute to them for their efforts, all the time, on behalf of all of us and all our constituents.

Let me first speak more generally about organ transplants and the challenges of organ transplantation. In the UK, the need for an organ is greater than the number of donor organs available. About 8,000 people are on the national transplant list waiting for a transplant that will save their lives or significantly improve their quality of life. Unfortunately, too many people wait too long for a suitable organ to be donated. About 1,000 people a year die waiting—about three adults or children every day. That applies to organs in general. Many others lose their lives before they even get on the transplant list. As of 3 April this year, 75 people with cystic fibrosis were waiting for a lung transplant. About 50 cystic fibrosis patients receive a transplant each year, but unfortunately about 20 patients die each year on the transplant list. We can see the clear challenge to meet that need and assist those people.

This means that there has to be a system to ensure that patients are treated equitably and that donated organs are allocated in a fair and unbiased way based on the patient’s clinical need and the importance of achieving the closest possible match between donor and recipient. A number of factors are involved. The rules for allocating organs are drawn up by the medical profession in consultation with other health professionals, specialist solid organ advisory groups, and health administrations. Factors such as the blood group, tissue type, and age and size of the donor and the recipient are taken into account to direct the allocation of the organ and identify the best-matched patient or, alternatively, the transplant unit to which the organ is to be offered.

The Cystic Fibrosis Trust report “Hope for all”, published on 10 March this year, makes a number of recommendations focusing on three key aspects: increasing the number of organs donated for transplantation; making sure that we make best use of the donated organs; and making sure that patients are fully involved in decisions about their care. We continue to invest in the donation programme to optimise transplantation in the UK. In the five years between April 2008 and April 2013, donation rates rose by 50.3% and transplant rates rose by 30%. That is a record of good and significant progress in recent years. I pay tribute to NHSBT for the work it has done in this regard, alongside other health professionals and the charities. Encouragingly, donor and transplant rates continue to rise, and we see that pattern this year as well. However, we know we can do more to match the successful donation programmes in some other countries —as the hon. Lady said, there are other countries with better records—and to give more people the opportunity of a transplant.

As the hon. Lady and other hon. Members may know, a new seven-year UK-wide organ donation and transplantation strategy, “Taking Organ Transplantation to 2020”, was published in July last year. The strategy expressed the desire to make the UK system comparable with the best in the world. Within that, it aims for a rate of consent—the hon. Lady specifically talked about consent rates—of above 80%; it is currently 55%. Increasingly, consent is the most important strategic aim—interestingly, more so than donation. Spain achieved a consent rate of 84% in 2011—a remarkable achievement. We know that we have particular challenges in relation to consent rates in black, Asian and minority ethnic communities, which I have discussed at length with NHSBT and which hon. Members are aware of. I know of hon. Members not present here today who have done specific work in some of their local black and minority ethnic communities to raise awareness on this point. I would like to see us do more of that and use parliamentarians to do so.

[Kerry McCarthy]

It is perhaps remiss of me not to have mentioned in my speech the fact that in the past year Bristol has had its first Muslim lord mayor who, during his year as lord mayor, chose to focus on encouraging blood and organ donation from the BME communities. As his term of office is almost up, I ought to take this opportunity to congratulate Councillor Faruk Choudhury on that effort.

[Jane Ellison]

I join the hon. Lady in congratulating the lord mayor. That is exactly the sort of local leadership that can help. One of the big pluses of the devolution of public health to local government is that we see such leadership from people who know their community best and understand the diversity in their locality. I am keen to encourage that. Only recently we celebrated examples in other areas, where we saw that specific leadership in some communities where health outcomes were not as good as they could be. We are always looking for such opportunities, and I am delighted that the hon. Lady has taken the opportunity to highlight local leadership in that regard.

Our focus in the strategy is initially on increasing consent rates. We want people to support transplantation. We can all imagine that families are being asked to agree donation at probably one of the worst times in their life, but many families find that they get comfort from knowing they have helped others to live. We will keep a close eye on what happens in Wales following the changes there, to which the hon. Lady alluded. NHSBT also keeps international experience under careful review. I mentioned the good success rates in Spain, for example.

We need to make sure that we make the best use of the donated organs. Currently donor lungs are procured by a retrieval team and allocated to the transplant centre on a zonal basis, based on the location of the donor. The transplant team at the centre will decide whether or not to accept the lungs and will select the most appropriate recipient.

The trust’s report recommends the implementation of a national lung allocation system whereby donor lungs are given to the most urgent patients, regardless of where they live.

This is something that NHSBT’s cardiothoracic organs advisory group, which includes both lung clinicians and lay membership, will be considering very shortly, and in particular whether we should introduce a national lung allocation scheme for people who need a lung transplant urgently, with all remaining donor lungs continuing to be allocated on a zonal basis. The advisory group’s recommendations will then be considered by NHSBT’s transplant policy review committee, and if a change of allocation procedures is agreed, it will be implemented as soon as the governance arrangements can be put in place.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 22nd October 2013 Commons Chamber

[Dr Poulter]

As the hon. Lady will be aware, on the basis of the Francis report the Berwick review considered that issue in detail and highlighted the fact that safe staffing levels are not about ticking a box for minimum staffing, but about developing tools that recognise the individual needs of patients on the ward. The previous Government went down the route of tick-boxes in health care. I worked on the front line during that time and that route did not deliver high-quality care. We need the right tools to support front-line staff so that they make the right decisions in looking after patients. It is not about tick-boxes; it is about good care.

[Kerry McCarthy (Bristol East) (Lab)]

7. What recent assessment he has made of the effect of the public health responsibility deal on the products and marketing practices of the fast-food industry.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

We appreciate the contribution that the fast-food sector is making to the responsibility deal. More than 5,000 fast-food restaurants have labelled calories clearly, which means that more than 70% of high street fast food and takeaway meals are labelled. There is always more to do and we are keen to take this forward. Progress has been made through voluntary responsibility deals with industry.

[Kerry McCarthy]

I welcome the Minister to her new post. I do not suppose she has yet had time to look at the authoritative international study of asthma and allergies in childhood, which shows a clear link between the consumption of fast food and asthma and allergies. The Government, however, have refused to discuss that with the public health responsibility partners. When will the Government start to take public health seriously and hold companies to account?

[Jane Ellison]

The idea that the Government do not take responsibility for public health seriously is ridiculous. Public health will never be improved just from Whitehall. The work has to be done together, among local government—which is keen and has been given the tools and resources—central Government, business and industry. Such long-term partnership working to improve the public’s health can only be done together. I will look at the hon. Lady’s specific point, but I reject the idea that the Government are not taking this issue seriously—far from it.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 26th February 2013 Commons Chamber

[Norman Lamb]

I thank my hon. Friend for that question. I am happy to discuss it further with him. Value-based pricing will be primarily for new drugs, but obviously I understand his concern. It is the concern of the Government to ensure good access to cancer drugs for patients in the future.

[Kerry McCarthy (Bristol East) (Lab)]

Recent comprehensive research by the international study of asthma and allergies in childhood found strong evidence of a link between fast food and asthma, but when I asked the Minister which public health responsibility deal partners he had discussed that with, he said that evaluating science was not within their remit. Does he agree that if the fast food companies have the kudos of being classed as public health responsibility deal partners, they ought to look into such research and actually take some responsibility?

[Anna Soubry]

Those are good points well made, if I may say so. I am more than happy to discuss that further with the hon. Lady, because I take the firm view that everyone involved in making, manufacturing, supplying and selling food has a responsibility to make sure that all of us have longer, healthier, happier lives. I am all for ratcheting up the responsibility deal.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 27th November 2012 Commons Chamber

[Anna Soubry]

I am very grateful for the work of Pancreatic Cancer UK. We have put the proposals from its seminar last June into the guidance that we are issuing. I am meeting Pancreatic Cancer UK, other cancer charities and other people who are involved in cancer work this afternoon. I will be happy to raise the matter with them directly and to meet the hon. Lady and representatives of this very good cancer charity. She is right to expose the fact that this cancer is difficult to diagnose. We will be launching pilots in January and I hope that more people will take advantage of that campaign and come forward if they have any symptoms.

[Kerry McCarthy (Bristol East) (Lab)]

11. What contact there has been between his Department and the director of the NHS south-west pay, terms and conditions consortium.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

Since the south-west consortium’s plans were made public in May this year, Department of Health officials have been in contact with NHS employers, NHS trade unions and the south-west consortium better to understand the views of all parties. The Department of Health wants to find a resolution and supports national pay awards.

[Kerry McCarthy]

I thank the Minister for that response and for his acknowledgement earlier that the way in which the south-west consortium has handled the negotiations has been heavy-handed. It is appalling that staff found out about the plans only through the leaks as, it appears, did the Department. Will he go back to the director of the consortium and urge him to put everything on hold in the south-west while national pay discussions are continuing? As the Minister says, this ought to be about national pay, not regional pay.

[Dr Poulter]

I fully agree with the hon. Lady and I take her concerns on board. However, because of the additional freedoms introduced by the previous Government, local employers in foundation trusts throughout the NHS have additional freedoms to set their own pay, terms and conditions. Under the rules introduced by the previous Government, it is impossible for us to intervene directly in the matter, except by continuing to encourage trade unions and NHS employers to meet the national agreements. If national terms and conditions are agreed to, I am sure that they will be endorsed at a regional level by the south-west consortium.

Regional Pay (NHS)

Kerry McCarthy Excerpts

Wednesday 7th November 2012 Westminster Hall

[Mr Bradshaw]

Yes, indeed I do congratulate the trusts in Torbay, which have held out against the pressure to join this cartel. I hope very much that the hon. Gentleman will put his money where his mouth is and join Labour MPs in the Division Lobby later today, when we will have a main debate on this very subject in the main Chamber.

[Kerry McCarthy (Bristol East) (Lab)]

I thank my right hon. Friend for bringing this issue before us; we have another debate on regional pay this afternoon, but it is important that we have an opportunity to focus on the south-west. Does he agree that one of the most damaging things for morale was that staff found out about the proposals only because they were leaked? There was no attempt at consultation beforehand; the consortium was set up, and the fact that those involved were trying to undermine people’s pay and conditions without talking to them gradually dribbled out.

[Mr Bradshaw]

Yes, I absolutely agree: the whole thing has been handled extremely badly by the trusts involved.

If the proposals go through, the trusts involved are likely to see an exodus of staff, not only to other regions, but, as the hon. Member for Torbay (Mr Sanders) suggested, to trusts in the south-west that are not part of the cartel.

--- Later in debate ---

[Anna Soubry]

I am extremely grateful for that clarification and I take note. My offer remains: if the right hon. Gentleman would be so good as to contact all those people who wrote to him and seek their permission—in my experience hon. Members often do not need to seek such permission from someone who has contacted them, but simply pass messages on to the Minister—I will happily reply to every one of them, explaining the Government’s view on the matter. I very much hope that the right hon. Gentleman, too, will share my comments today with all the people who have contacted him.

First, I pay tribute to everyone who works in the national health service, for their continuing hard work and dedication to the NHS. The Government have made it clear that they support the continued option of national terms and conditions in the NHS. We expect most employers will want to continue to use them, provided that the terms remain fit for purpose and affordable. However, every pay system needs to be kept under regular review, to ensure that it remains sustainable. The responsibility for that, in respect of the Agenda for Change pay system, rests with the NHS Staff Council, a partnership of NHS employers and trade unions. The council has been considering the possibility of changes to the national terms of the Agenda for Change for about two years. Indeed, I understand that the right hon. Member for Leigh (Andy Burnham) asked them to explore the possibility of more

“flexibility, mobility and sustained pay restraint”

as long ago as 2009, when he launched “From good to great”, but there was no change then, and we are still waiting for any change.

The trade unions tell us that we should stop the south-west consortium—and the right hon. Member for Exeter makes the same point—until we can see whether a national deal is achievable. However, experience suggests that that would be a battle of hope over experience. Negotiations in the current economic climate are not easy and they are not helped when some smaller unions have already declared that they will not support any change. They prefer to stick their head in the sand and put NHS organisations and their members’ job security at risk, rather than engaging in any meaningful way. There is no point believing that the Government can wave a magic wand and make the financial pressures disappear.

[Kerry McCarthy]

When did the Department of Health first find out about the formation of the consortium? When I have written to Ministers in the past, all that I have been told by way of response was factual information about when the document was leaked to the press. They have refused to answer that question about whether they were involved in setting up the consortium, or encouraging people to set it up before it was formed.

[Anna Soubry]

I believe we were not, but I will make further inquiries of my officials, and we will write to the hon. Lady and give her assurances about that. If I am in any way wrong I know that I will be corrected, and will be happy to say so.

It is my understanding that several options have been put forward. No decisions have been made, but every effort is being made to engage with the staff to reach an agreement. I just wish that all the trade unions that represent so many people in the south-west consortium would engage in that process. It is my firm view that that is the absolute duty and aim of all responsible trade unions.

Regional Pay (NHS)

Kerry McCarthy Excerpts

Wednesday 7th November 2012 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

I, too, was in the Westminster Hall debate this morning and I congratulate my right hon. Friend the Member for Exeter (Mr Bradshaw) on securing it.

As we have heard, regional pay would damage our economy and the NHS. As the shadow Secretary of State said, 60 senior academics have written to The Times to warn the Chancellor that there is “no convincing evidence” to support his claims on the benefits of regional pay and that

“On the contrary, such a policy could reduce spending power, undermine many small and medium-sized businesses in areas of low pay, and aggravate geographical economic and social inequalities.”

According to research by the New Economics Foundation, the Government’s evidence of an alleged public sector pay premium

“suffers from a number of serious shortcomings”

and their statements are

“at best misconceived, at worst mischievous and ideologically driven.”

It concludes that regional pay would cost our economy £2.7 billion at best—if the private sector expanded where the public sector contracted—but that the cost could be up to £9.7 billion each year, with the loss of 110,000 jobs. Regional pay would reduce spending power in the south-west by £1.2 billion.

When we consider regional pay from the perspective of the NHS, we cannot, or at least should not, talk about private sector jobs replacing public sector jobs. The public’s response to the Government’s disastrous reorganisation of our NHS proved that patients do not want to be treated by Virgin Care or Serco, but Ministers still seem determined to remove the N from NHS.

For my constituents, today’s debate is even more important because, as we have heard, trusts in our region have been developing the NHS south-west pay, terms and conditions consortium. This morning, I asked the Under-Secretary of State for Health, the hon. Member for Broxtowe (Anna Soubry)whether the Government knew about the consortium before it was established and whether they encouraged the trusts to set it up, and it was interesting that she said, “My understanding is we were involved”—[Interruption.]

[Alison Seabeck (Plymouth, Moor View) (Lab)]

That is a fascinating answer because it is at odds with the one I received from the Secretary of State during Health questions.

[Kerry McCarthy]

I very much hope that when the Government—[Interruption.]

[Mr Speaker]

Order. Let me say to the Minister once and for all—[Interruption.] No. I say to the Under-Secretary of State for Health, the hon. Member for Broxtowe (Anna Soubry)—perhaps she will have the courtesy to listen when she is being spoken to from the Chair—that it is not acceptable for any Member of the House to treat the debate as a private conversation between himself or herself and the Member on his or her feet. If the Minister is dissatisfied with what is being said, other people on her Benches can pick up those points. It is totally unacceptable to behave in this way and it will stop straight away. I hope the Whip has noticed it, and I will be speaking to others about the matter.

[Kerry McCarthy]

There is some confusion. When I wrote to the Health Secretary to get some clarity—

[Ian Mearns (Gateshead) (Lab)]

On a point of order, Mr Speaker. I could not help but notice that the clock did not stop during that intervention. I see that a minute has been added on, but I think it should have been more than that.

--- Later in debate ---

[Kerry McCarthy]

I shall try to move on. When I wrote to the Health Secretary, the response I got back was very ambiguous. It referred mysteriously to when the document was first leaked to the public, rather than saying what the Government were aware of in relation to the consortium.

In the debate earlier today, the Minister definitely said the words, “Yes, we were.” The civil servant behind her was shaking his head and saying, “No, we weren’t. No, we weren’t,” so I hope that we get some clarity on the matter and a firm answer when the Government respond to this debate. To what extent did they know about and encourage the south-west consortium to start?

The consortium, as I indicated, was initially developed in secret but since NHS staff found out about it by accident, I have received hundreds of letters and e-mails from staff who are angry and anxious not just for their own futures, but for their patients. It is shocking that they found out about that only by accident and were not consulted by the consortium.

[Yasmin Qureshi]

Does my hon. Friend agree that we were a bit surprised to hear the Secretary of State say that Labour is asking for national pay and opposing regional pay because the unions are bankrolling us? My hon. Friend said that she had received many e-mails. I am sure that, like me, other Opposition Members have received hundreds of e-mails from people who work in the health service—ordinary people, working people—who say that they do not want regional pay. That has nothing to do with any union.

[Mr Speaker]

Order. Interventions on both sides should be brief, and rather briefer than that.

[Kerry McCarthy]

It is sad that the Secretary of State resorted to the union bashing that we also heard from the Minister in the Westminster Hall debate. I have had a meeting with the Royal College of Nursing, and I have a briefing from the BMA about the case against the local and regional approach to pay. That has nothing to do with Labour-affiliated unions. Those organisations are speaking up for their staff, who are extremely worried. It is patronising to say that staff are concerned only because someone stoked them up and told them falsehoods or whatever. They are worried about the proposal because they work in the NHS and they know what impact it will have on them.

The south-west consortium’s explicit intention is to reduce costs by considering

“further more radical changes to the pay and conditions of the workforce”.

Yet to do this at a time when hospital budgets are under great strain and nurses are being made redundant, each trust paid £10,000 of public money to join the consortium. They have to appoint a consortium director, establish a consortium working group and commission legal advice, so it remains to be seen how much the added bureaucracy of the consortium will cost.

Even more worrying is the lack of transparency or accountability for that spending, given that we still do not know who is responsible for employing the director of the consortium or to whom they are answerable. Perhaps most disturbingly, the project initiation document explained that

“it is likely that Trusts would be obliged to dismiss and re-engage staff to secure such changes”,

which not only calls into doubt the validity of their proposals, but has serious cost and legal implications.

I can only agree with the BMA that regional pay is a

“costly and time consuming distraction”.

But of course this affects not only the NHS as an institution, but the individual staff on whom the whole service relies, who potentially face a 15% pay cut. The consortium proposes to cut sickness absence payments so that they are paid only at the base rate, yet for staff permanently on nights, the extra payments that they get for working night shifts are an intrinsic part of their salary, on which their mortgage payments often depend. It would constitute, on average, a 20% pay cut if they were ill and were paid just at the base rate.

Reducing annual leave entitlement not only amounts to a pay cut but means that staff who rely on their leave to balance caring responsibilities will face additional costs, if they can even continue to work. At the same time, extra child care costs will be even less affordable if enhanced payments for nights and weekends—payments which are intended to recognise their personal sacrifices and the additional costs that these workers incur—are changed.

The consortium is also considering increasing working hours. Once again, this is an effective pay cut, which ignores the fact that so many overworked staff already work longer hours. According to the Royal College of Midwives, 87% of midwives “frequently” or “always” worked more than their contracted hours, and more than half reported that none of those extra hours were paid for. These are emotionally and physically demanding jobs and the consortium risks leaving staff even more tired, or coming into work when they are really too ill to do so, in order not to lose their extra pay.

The south-west is a net importer of NHS professionals, but our trusts risk losing demoralised and under-appreciated staff to other regions where the terms and conditions are more favourable. NHS staff require the same training, dedication and commitment all around the country, so why should my constituents be paid less simply because of where they live, especially when there can be a greater demand for health services in the south-west because of our older population, and when the cost of living in many places is so high?

[Mr Jim Cunningham (Coventry South) (Lab)]

The same sort of thing happened many years ago with plant bargaining, so to speak, at a regional and a national level in the private sector. The employer did away with the national agreements, did away with the regional agreements, and the end result was people being poorly paid. The Secretary of State has no experience of that and he has the effrontery to come to the House today and foist it on everybody. It is a disgrace, bearing in mind who his paymasters are, when he talks about the trade unions.

[Kerry McCarthy]

I agree entirely. There is a danger of even greater fragmentation so that we move from national pay to regional pay to very localised pay, with everyone competing against each other—

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

Order. The hon. Member for Coventry South (Mr Cunningham) said “paymasters”. I am sure that he would not want that to be on the record, and that he would want to withdraw it—[Interruption.]

--- Later in debate ---

[Mr Deputy Speaker]

Not individuals? I was worried that the hon. Gentleman was referring to individuals.

[Kerry McCarthy]

During the first two years of this Government, the south-west’s nursing work force has fallen by more than 3.5%, which is three times the national average. According to the 2011 national NHS staff survey, 11 of the 20 trusts involved in the south-west consortium are in the worst 20% for people feeling satisfied with the quality of work and patient care. The consortium arrangements will not alleviate these pressures and can only make working conditions worse.

These statistics are reflected in the often heartbreaking comments that I have received from constituents, who report on increased work loads, under-staffed wards, and friends and families they rarely get to see. They are considering leaving the south-west, or the NHS altogether. The consortium’s proposals are the last straw when morale is already at an all-time low. One constituent told me:

“I now feel as disposable as the equipment I use. Nursing is on the cusp of disaster.”

When the Prime Minister claimed to lead

“the party of the NHS”,

I do not think my constituents knew whether to laugh or cry.

Health Ministers’ answers on the consortium, like the Secretary of State’s speech today, frequently hide behind “Agenda for Change”, a framework that was agreed only after lengthy negotiations, as my hon. Friend the Member for Birmingham, Erdington (Jack Dromey) said. This prevented there being damaging competition for staff, avoided the risk of ratchet bargaining and minimised the costs of pay negotiation. It meant that nurses were no longer paid as little as £12,000 just because of where they lived. Significantly, “Agenda for Change” has largely eradicated equal pay challenges, so I hope Government Members do not want to replicate the larger gender pay gap that we see in the private sector.

National negotiations on “Agenda for Change” are now being undermined by the consortium, especially when the chair of NHS Employers, who also runs a trust in the south-west, was reportedly instrumental in establishing it. I would be interested to know what conversations Ministers have had with the chair of NHS Employers before she played a leading role in setting up the consortium. The Royal College of Nursing warns that the NHS is simply not equipped for the added bureaucracy, time and expense needed to negotiate pay on a more local basis, and that this ultimately would take the more experienced staff away from the front line.

Health Ministers have sought to defend the possibility of regional pay in the NHS by pointing to its potential under “Agenda for Change”. The inclusion of high cost area supplements and the recruitment and retention premiums, as we have already tried to explain to those on the Government Benches, were designed to help trusts recruit in high cost or low supply areas. They were not intended to drive down pay and drive away staff.

NHS staff in Bristol are having to work more, with fewer staff and when their pay is frozen. They are stressed at work and stressed at home as they try to make ends meet each month, and now there is a conspiracy to reduce their pay and conditions. My constituents need answers from Ministers. When did the Department of Health first find out about the consortium? I do not mean when it first found out that the documents had been leaked to the public. Who is responsible for appointing the consortium’s director and for its budget? Most importantly, will the Government intervene to prevent the consortium undermining the progress made under “Agenda for Change”, local health services and the NHS as a national service?

My constituents deserve to be paid according to the work they do, not where they live. The proposals for regional pay risk undermining our national health service and undervaluing the work done by those who have dedicated their lives to it. The proposals should be scrapped, and scrapped now.

Nursery Milk Scheme

Kerry McCarthy Excerpts

Monday 5th November 2012 Commons Chamber

[Annette Brooke]

Absolutely. Indeed, I was talking to one of my local nurseries—a nursery that is registered for milk. The owner of the nursery had discussed with parents whether they wanted the milk or not. Parents had voiced concerns about participating because their children would not drink milk at home, but they said, “Well, we’ll give it a try,” and to their surprise, every child in the nursery drinks their milk in the group setting.

However, in the past few years the costs of the scheme have been rising. In 2007-08 it cost the Government £27 million, but by 2010-11 the amount had risen to £53 million. Increased costs could be due to greater uptake, growth in the number of under-fives in day care settings or increases in the price of milk. The Department of Health has predicted that costs could rise as high as £76 million by 2016 and so recently set up “Next Steps for Nursery Milk”, a consultation to review the current system and consult on how to make efficiencies.

A significant number of day-care providers are effectively paying over 90p a pint for school milk. I know that we must ensure that the scheme can operate as efficiently as possible while ensuring the greatest access for entitled children. There is clearly also a need to add as little as possible to the burden of bureaucracy on child-care providers and schools. I want to take this opportunity to say how pleased I am that the Department has stated its commitment to this universal benefit for under-fives and that it is fully committed to keeping it as such. The options offered in the consultation are: to leave the scheme as it is; to cap the price that can be claimed for milk; to issue e-voucher cards with economy incentives; or for day-care providers and schools to arrange the direct supply of milk themselves.

There are a number of important aspects to consider when thinking about changing the current scheme. First, it is important that as many eligible children as possible receive their allocation of milk. The Department’s own figures show that roughly 40% of the total number of under-fives currently receive milk at their day-care setting. Whatever system is put in place must be easy to use for day-care providers so that as many as possible take part in the scheme. Given the percentage of children who currently do not receive milk, I ask the Minister to look at how the Government can increase the number of children receiving the milk to which they are entitled. I appreciate that that might be counter to the idea of reducing the costs of the scheme, but I was personally rather disturbed that perhaps only 40% of eligible children access the milk.

[Kerry McCarthy (Bristol East) (Lab)]

Is the hon. Lady aware that many children are lactose intolerant and that there have been links between the consumption of dairy products, particularly milk, and the development of childhood asthma—there is no firmly proven link, but it has been suggested that there is a connection? Are there alternative sources of calcium, such as soya milk, available to children who perhaps should not be drinking dairy milk?

[Annette Brooke]

I absolutely take on board the point that some children are allergic to cow’s milk. I am sure that is an issue the Minister could address when he sums up.

Winterbourne View

Kerry McCarthy Excerpts

Tuesday 30th October 2012 Commons Chamber

[Norman Lamb]

On the first point, I agree with the hon. Gentleman that these closed settings and institutions too often create the conditions for abuse to take place. It is all the more important, then, to get the regulation right for the sake of those individuals who have to be in such institutions—a minority have to be there for their own safety or that of the public. On the second point, he raised the general issue that for a long time—probably, it has always been the case—mental health has been a poor relation to physical health in terms of the amount of money spent on research and how the money flows within the NHS. I seek to address that.

[Kerry McCarthy (Bristol East) (Lab)]

In Bristol, we face the closure of care homes, while south Gloucestershire is outsourcing the in-house home care teams. Following the case of Winterbourne View, which is just outside my constituency, there is a lack of confidence in the area in the private sector. What can the Minister do to reassure people that it is safe to place vulnerable relatives in private sector care homes?

[Norman Lamb]

First, abuse is unacceptable and horrifying wherever it takes place, whether in the public sector or the private sector. The review that followed Winterbourne View being exposed revealed poor standards of care in too many places in both the public and private sectors. We need to be clear on that. Secondly, I have questioned whether there is adequate corporate accountability and whether adequate rules and regulations are in place to ensure that accountability. If people are making a profit out of providing care, they have to be held to account for the standards of that care.

Social Care (Local Sufficiency) and Identification of Carers Bill

Kerry McCarthy Excerpts

Friday 7th September 2012 Commons Chamber

[Barbara Keeley]

I have not followed that as closely as I might have done, so I hope that we will hear from my hon. Friend later about the practice in Wales. However, we have much to learn from other countries.

It is important that we bear in mind the shrinking provision of social care because we know that demand is growing. Since 2010, local councils’ adult social care budgets have been cut by more than £1 billion, and a further £1 billion of cuts is expected. The number of vulnerable older and disabled people who have their home care services fully paid for by their local authority has fallen by 11% over the past two years. According to a survey by the Care and Support Alliance, services have been cut to 24% of disabled adults. Research by Age UK shows that cuts to council budgets mean increased fees for services—in fact, service fees have increased by 13% over two years. Almost half of all local councils are charging more, or making new charges, for home help or day care. One in six councils has reduced personal budgets for care packages, and almost half of all councils have frozen the rates that they pay for residential care. In addition, the fees for both residential care and nursing home care have increased by 5% on average during the past year.

Those are important statistics, but sadly they are not routinely gathered so that they can be scrutinised by, for example, the Health Committee. They were mainly gathered through freedom of information requests by my hon. Friend the Member for Leicester West (Liz Kendall) and various organisations. Local authorities do not have a full picture of local care provision, particularly that needed by the 80% of care users who are self-funding. Those self-funders—people whose assets exceed the means test for local authority support—spend £5.5 billion a year on care, with top-ups to statutory services costing them another £1.15 billion. It is vital that we have a better and more complete picture of social care provision, including that very large amount for self-funders.

Clauses 1 and 2 introduce a strategic duty on local authorities in England to ensure that sufficient social care services exist in their local area to meet the care needs of disabled people and carers. They seek to move towards local authorities having a total and accurate picture of what is purchased and provided in their area. Existing duties on local authorities relate only to those for whom the local authority has a statutory responsibility—disabled people and carers who meet eligibility criteria and who do not exceed means-testing thresholds.

It might be argued that the Government’s draft Care and Support Bill introduces a duty on local authorities to establish and maintain the provision of information and advice relating to care and support for adults and carers. The draft Bill says that a local authority must promote the efficient and effective operation in its area of a market in services for meeting care and support needs. However, that duty does not cover an assessment of local sufficiency, and it is that picture that can truly help carers and disabled people, particularly in terms of working, as we have just discussed.

Andrew Dilnot, in his 2011 report, set out the need to place duties on local authorities to provide information, advice and assistance services in their area, and to stimulate and shape the market for services. Moving to embrace a duty to develop a full picture of care and support services, and to assess the sufficiency of those services, will assist local authorities in developing their role as market shapers.

Clause 2 includes a duty to promote sufficiency of the supply of care, which, as we have discussed, would bring a new focus on the importance of social care in promoting and enabling work for disabled people and unpaid family carers. Carers UK has analysed local authority joint strategic needs assessments, which is really the only assessment that we have, but this analysis has shown that the majority of those assessments do not link care provision with work, so clause 2 would link well with Government strategies around work for carers and people with disabilities.

[Kerry McCarthy (Bristol East) (Lab)]

A couple of weeks ago in my constituency, I met a group of young adult carers aged from 18 to 24 who, for the most part, look after disabled parents, but sometimes siblings as well. They have particular needs because they are at the stage when they want to get on with their careers and perhaps go to university, and they have to make the choice between that and putting their life on hold to care. Does my hon. Friend agree that we need particularly to look at the needs of that group, who do not fall into the same category as other adult carers?

[Barbara Keeley]

I do, and I will come on to the issue of student carers. The Bill explores student carers for the first time. I do not know why the issue has not been discussed more in the House, but it is vital that we, as constituency Members, take note of it.

Joint strategic needs assessments done at local level do not link care provision with work, and that is why the clause is important. The Department of Health has an upcoming event on developing care markets, the invitation to which we received yesterday. It says:

“the ability to choose from a variety of high-quality services should be available to all people in a local area, regardless of who pays for their care.”

Age UK, in its support for my Bill, commented on that Government aim to give people who need care and support a greater choice. It said:

“this cannot become a reality unless local care markets work effectively to provide people, including those with specialised needs, with appropriate services. Whilst we welcome proposed duties in the draft Care and Support Bill that would require local authorities to take steps to ensure that appropriate services are available this falls a long way short of a requirement to ensure sufficiency. We will certainly be advocating for a Bill or subsequent regulations that will include more specific duties on local authorities.”

People with Learning Disabilities (Abuse)

Kerry McCarthy Excerpts

Monday 3rd September 2012 Commons Chamber

[Mr Clarke]

I am grateful to my hon. Friend. On these matters she shows a great humanitarian understanding, and the very point that she raises was raised with me today by families who came down to London from all over the UK because of this debate. My hon. Friend should know that she has considerable support.

The harrowing examples that are given, and there are many more, of depraved activity that some will inflict on the most vulnerable among us are almost impossible to comprehend. My hon. Friend outlines some of the reasons for that. The courts will deal with those responsible, and that is how it should be. Families of the victims may find solace when the guilty are sentenced, but what of those who seek no vengeance? What of those who take the view that such abuse should never have happened and want to know why it did happen? It is fair to say that we all want to know who was responsible for presiding over this human crisis. How far and how wide does culpability spread?

We cannot erase the evidence of abuse, where and when it happened. We cannot undo the pain, the suffering and humiliating experience endured by people with learning disabilities, and we most certainly cannot leave it to the monolithic bureaucratic machine to ensure that such abuses never occur again. We have completely and unmistakably failed to protect adults in many aspects of their character where we see that their mental capacity is that of a child.

Winterbourne View was operated by a company called Castlebeck Care Ltd, which charged the public purse an average of £3,500 per patient per week for the services that it provided. For that amount of money, a person could stay in the Ritz hotel. For that amount of money, Castlebeck Care Ltd saw a turnover of £3.7 million per year from Winterbourne View. We should know what that money was spent on. We do not know, but the Department of Health should be able to solicit this information and put it into the public domain—again, a point that the parents whom I met today made loudly and clearly. It is only then that a proper, informed judgment can be made of whether the reason for being of those who are providing such services is the pursuit of profit or patient care.

As I said, I met today families who related their own experience. What they told me is that questions and challenges must be addressed to local councils and local health authorities, which have a crucial role. The Improving Health and Lives organisation published a report written by Professor Emerson of Lancaster university, which analysed the Care Quality Commission’s investigations into 150 care providers. Professor Emerson established that only one in seven patients were being supported in an environment that was fully compliant with statutory regulations. He also established that units operated directly by the NHS were more likely to be compliant than those that were out to make a profit. Half the units investigated did not meet those important statutory levels of care.

The Care Quality Commission knew exactly what was going on. Reading through the material, it is impossible not to conclude that its inaction was simply shocking. It presided over the shambolic and chaotic delivery of vital care services. It was appalling when not even lip service was paid to the adherence to statutory regulations or the basic minimum levels of care. Prior to the abuses at Winterbourne View, there were months and months when the commission carried out no inspections at all. Its self-described “light-touch regulation” is part of the reason these abuses occurred. Winterbourne View was inspected only once every two years in the absence of any complaints. Clearly, that is profoundly unacceptable. The commission was also affected by the coalition Government’s civil service recruitment freeze, which resulted in it having fewer inspectors than it clearly required.

Inspectors must increase the pressure in care units that are underperforming. Inspections must occur more regularly and without warning. There must be stiffer penalties for care providers for non-compliance with their statutory obligations. The commission must be relentless when it comes to investigating care providers that cause concern. Of course, as we all know, Winterbourne View was closed down, but how many people know that Castlebeck Care Ltd had two other units closed down as a result of serious concerns about the level of care? The “Panorama” documentary not only exposed Winterbourne View; it laid bare the unbelievable ineptitude of the commission, which was utterly incapable of taking action in all three units before the scandal was exposed. In my view, the new mantra should be, “Inspections will occur anywhere at any time and without prior notice.”

[Kerry McCarthy (Bristol East) (Lab)]

My right hon. Friend talked about meeting the parents of the patients in the care homes. One of the concerns that have been raised with me is that of elderly parents who care for children with learning disabilities. In particular, my constituent Ivor Needs has a son who is vaccine damaged. Because Winterbourne View is in the vicinity of my constituency, they are really concerned because they have no confidence that the system will be able to look after their child when they are no longer around to do so. Does my right hon. Friend agree that we need some system in place to ensure that people such as Ivor’s son, Matthew, are looked after when their parents are no longer around to do so?

[Mr Clarke]

My hon. Friend makes an excellent point and, yes, she is correct. That point was raised with me today several times. Over the years I have certainly had many letters from parents who simply ask, “What will happen to our children when we are no longer here?” I am sorry to say that, on this evidence, I worry very much indeed.

There must also be a review to ensure that the current funding system does not incentivise the keeping of patients for long periods at assessment centres. If adults with learning disabilities are better treated and cared for in their own communities, there has to be a support network. Having local care units that are integrated into local treatment centres is a better model than dispatching patients for assessment hundreds of miles away from their friends, families and communities.

We cannot ignore the voices of the 86 leading figures and charities in the care sector who have stated that the current model poses a real risk that similar abuses will occur in future. Enhanced sentences rightly already exist for those found guilty of racism and homophobia. To begin the process of moving to local integrated units, the Government should begin closing large assessment centres and set a time scale. Local commissioners should develop local services that meet the care requirements of those with learning disabilities.

Sadly, those issues were identified long before the scandal emerged. The late Professor Mansell’s report “Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs” was clear in its analysis and prescribed remedy.

The current care model, and the regulation of it, led to these abuses. It is the system that we are challenging. Simon spent 15 months at Winterbourne View and was hit, pushed, abused and tormented. When he cried for help, we collectively let him down. Then there is the experience of James, a child with a learning disability and autism who suffered abuse and neglect. When James needed help, we collectively let him down. Chrissy suffers from various conditions such as autism and epilepsy as well as from challenging behaviour. When Chrissy needed help, we collectively let her down. There is also Victoria, whose father died before she was nine years old. She suffered a lot of family stress. When Victoria needed care, we collectively let her down. Emmanuel, only six months out of school, was sent away to a unit far away from his family, where he remained for 18 months. All those people, and many more, have been collectively let down.

The scandal, highlighted so bravely by Terry Bryan, is predicated on the notion that if people want to abuse someone, they will, under the present system. The status quo is no longer a tenable option. I trust that the Minister will recognise that we need Government intervention to tackle and cure the cause of abuse. We never want a repeat of Winterbourne View or any similar home in today’s or tomorrow’s Britain. We want public support for our efforts in caring for and protecting people with learning disabilities. We must never collectively let them down again.