NHS and Social Care Funding

Julian Knight Excerpts

Wednesday 11th January 2017 Commons Chamber

[Mr Hunt]

I will make some progress before giving way again.

The second part of the motion talks about funding. There is no doubt at all that we will need to look after 1 million more over-65s in five years’ time and we will need to continue to increase investment in the NHS and social care system. That is happening with an extra £3.8 billion going into the NHS this year. Can I just remind Labour Members that that is £1.3 billion more than they promised when they stood for election last year? I just say this: it is not enough to talk about extra funding—you have to actually deliver it. Labour Members have to answer to their constituents as to why, for two elections in a row, they have promised less money for the NHS than the Conservatives, and why, in the one area where they are responsible for the NHS, they have cut funding.

[Julian Knight (Solihull) (Con)]

The Secretary of State is taking exactly the right, measured tone, which was absent earlier in the debate. We recognise that many trusts are under financial pressures, but some of these situations are historic, and in my area they reflect very poor private finance initiative contracts, which were thrust on them in a Gordon Brown sleight of hand.

[Mr Hunt]

My hon. Friend is right. What we did not hear from the Labour party is that, in 2010, we inherited a £70 billion PFI overhang, which is making it incredibly difficult for hospitals to recruit enough staff, because they are having to pay so much money to financiers.

Pharmacies and Integrated Healthcare: England

Julian Knight Excerpts

Wednesday 11th January 2017 Westminster Hall

[Julie Cooper]

I do not disagree with the hon. Gentleman’s point.

It is important that we recognise that community pharmacies provide their own premises and train their own staff. As a former business person, I totally get the point about value for money, but this is not just about money; it is about the efficient use of money. We all understand the pressures that our NHS face, and we have to look at that. There are a lot of myths floating around, so it is important that we clarify that.

There has been a lot of talk about the clusters. Again, because pharmacies are private businesses, they respond to demand in the community.

[Julian Knight (Solihull) (Con)]

The hon. Lady brings her expertise to the debate. Does she agree that we need more innovative approaches? The Grove surgery in Solihull has a symbiotic relationship with its local GP services, but in parts of the UK we seem to have run into the sand. We need greater public awareness and encouragement to take such innovative approaches forward.

[Julie Cooper]

I will come on to that very point in a moment.

To return to value for money, it is important that the Government take a responsible attitude and review funding for pharmacies, and I think that professional community pharmacists across the country accept that. Much has been made of the clusters. Pharmacies are independent businesses that arise and stay in business where there is demand. I do not know whether this is widely understood—hon. Members will have to forgive me if they already know this—but the global sum allocated to pharmacies is what pharmacies cost the Government. The Government know what community pharmacies are going to cost. If a new one opens, it does not cost the Government any more; it just means that the same amount of money is shared out more thinly. That is a bit of a red herring. We can be sure that if there is no demand for the services that a pharmacy provides, it will close.

Much has been made of the £25,000 payment, but that does not cover the cost of putting a van on the road and paying for a driver to deliver and administer a prescription delivery service. Those services are absolutely invaluable to communities with many elderly people. I had a conversation with practice managers and general practitioners in my constituency recently, and they were absolutely horrified because they use that service—there is a lot of repeat ordering—and if it were lost, they could not cope.

The Government are suggesting that in-surgery pharmacists are a substitute, but that is another red herring. I welcome the use of well-qualified pharmacists in GP surgeries, but that is a totally separate issue. It is like comparing hospital doctors with GPs. Community pharmacists are at the heart of the community and are accessible for many hours. The hon. Member for St Austell and Newquay (Steve Double) made the point very well earlier when he said that eight minutes is the average wait to see a qualified professional who can help with most things. We have got to embrace that and use what is already there.

I have had conversations with the National Pharmacy Association and the Royal Pharmaceutical Society, and just last night the chair of the English Pharmacy Board said, “We want to work with the Government. We want to sit down and look at how we can do more.” There is the idea that integration is a new thing waiting to happen, but we were proud as community pharmacists to be at the heart of the primary care team, working with GP surgeries, hospital discharge teams, community nurses and district nurses. They often came to us. GPs came and went—that is even more the case now, given the problems with retention in GP practices—so we provided the only continuity in healthcare for many chronically ill people. Particularly for the elderly, that was a vital part of the service, and we were really proud to provide it.

Many community pharmacies are proactive. When this business of moving towards a clinical approach was suggested, community pharmacies accepted it without it needing to be mandated. We invested in a purpose-built consulting room to provide a more clinical environment. That is the way forward, and most community pharmacies accept that.

What is the alternative to what the Government are proposing? For a start, we need a proper assessment of what the cuts will mean. There has been no impact assessment of which pharmacies will close. I agree with the hon. Member for Bury St Edmunds (Jo Churchill) that it will not be the multiples that will close; it will be the independent pharmacies that rely on the £25,000 to provide their core services. That is an absolute fact. Not a single pharmacy in my constituency qualifies for access payments, and only three in the entire city of London do. I can say with absolute confidence that in my constituency it will not be Boots that closes or cuts its hours; because of the volume of business, it has other ways of covering its overheads.

I ask the Government not to throw money willy-nilly at pharmacies, but to look at their value and assess the impact of the cuts. If they think that the best way forward is for some pharmacies to close, they must ensure that the right ones close. We must do what the professional organisations are asking for and come to the table. Pharmacies are begging to take on extended roles. There is so much good will there. The minor ailment scheme, which we were privileged to provide, is an important service. Busy families who have children with minor ailments do not have time to be at the GP surgery. GPs accept that, without that service, they could not manage. We all know that GPs work hard and are overstretched. This is not about criticising the work they do; it is about supporting them, saving the NHS money and taking off pressure.

I ask the Minister not to reconsider the funding, but to look at the way he works with pharmacies in the NHS. I ask him to look at their role, as many Conservative Members have said, and at how they can work with the Government to support other areas of the NHS, thereby saving money. Let us avoid a knee-jerk reaction with no proper assessment of the impact. Let us deliver a better integrated service. The way to do that is not to make blind cuts with no proper assessment.

Diabetes-related Complications

Julian Knight Excerpts

Tuesday 7th June 2016 Westminster Hall

[Paula Sherriff]

I absolutely agree, and it is encouraging to learn that such research and development is being carried out. I will later share details of a visit that my hon. Friend the Member for Heywood and Middleton (Liz McInnes) and I undertook recently, which proved very interesting.

[Julian Knight (Solihull) (Con)]

The hon. Lady has been most generous in taking interventions. I congratulate her on securing this vital debate. Does she agree that education is a key part of ensuring that individuals with diabetes can manage their condition and limit the complications that she mentions? In my constituency we have a diabetes support group that was established way back in 1994. It meets nine times a year, often hears from experts, and provides advice and support. Will she reflect on the role of support groups in helping people to combat diabetes?

[Paula Sherriff]

I thank the hon. Gentleman for that relevant contribution, and I absolutely agree. It is worth noting that, as with many conditions, education is often the key, and I will allude to that later in my speech.

Dementia and Alzheimer’s Disease

Julian Knight Excerpts

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered dementia and Alzheimer’s disease.

I thank all Members who have very energetically turned out in large numbers to support this debate. I am going to keep my speech to 15 minutes to give everybody else a chance to participate. I thank the shadow Minister for being here, and it is good to see the Minister in her place. We always get a good response from her, so I look forward to that.

Yesterday, we had a digital debate in preparation for this debate, and I have got some stats to give hon. Members an idea of how it went. It was organised by Lucinda Blaser and the staff of my office. We reached almost 3 million Twitter accounts, and a total of 1,100 tweets were sent throughout the day. There was an enormous amount of interest outside this House in yesterday’s debate, and the same is true of today’s debate.

I want to speak about the issues that concern me. It is hard to find someone whose life has not been touched in some way by Alzheimer’s or dementia. People up and down the country—unfortunately including many in my constituency—are affected by those indiscriminate diseases. Alzheimer’s and dementia know no class, colour, creed or gender; they can affect any of us. It is extremely important that we have this opportunity in Westminster to discuss advances in ways of tackling the disease. This debate raises awareness and puts the issue of dementia and Alzheimer’s on the agenda for the whole of the United Kingdom. All Members will bring their own knowledge of this subject to the House. We will hear contributions from Members from across the whole of the United Kingdom of Great Britain and Northern Ireland.

According to the Alzheimer’s Society, our ageing population will increase the trends. In 2015, 720,000 of the 856,000 people known to have dementia were in England, 45,000 were in Wales, 70,000 were in Scotland and 21,000 were in my home nation of Northern Ireland. In my trust area, which includes Lisburn, North Down, Down and Ards, the level of dementia is 25% higher than that of England after age standardisations. We have a higher level of dementia and Alzheimer’s in my constituency than anywhere else in Northern Ireland.

[Julian Knight (Solihull) (Con)]

I congratulate the hon. Gentleman on securing this absolutely vital debate. This is not just about the total number of cases of dementia that are now being registered; it is about the increase down the line. In my constituency, we are looking at an estimated increase of 30% over the next five years in reported dementia cases. Will the hon. Gentleman reflect on the increasing incidence of dementia?

[Jim Shannon]

The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.

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[Julian Knight (Solihull) (Con)]

It is a great pleasure to serve under your chairmanship, Mr Stringer. I reiterate my congratulations to the hon. Member for Strangford (Jim Shannon) on securing this crucial debate. The attendance is a great testament to the importance of this issue.

I mentioned in my intervention that we were facing a tidal wave in the United Kingdom, and unfortunately my constituency of Solihull is at the crest of that wave. The latest figures I have, produced by the Birmingham and Solihull dementia strategy forum, show that the estimated number of people with dementia is 13,819 in Birmingham and 2,798 in Solihull. That number is predicted to grow by 31% to 3,800 in Solihull and by 18% to 16,300 within Birmingham. My constituency has an acute problem because it has an older population—clearly an older one than Birmingham. In fact, in the ward of Silhill, from which Solihull gets its name, 40% of people are over 65.

This is a hot topic nationwide and an acute one within Solihull. That is one reason why I decided to become a dementia friend in 2014. Like my hon. Friend the Member for Aldridge-Brownhills (Wendy Morton), I took part in a sponsored session. One of the most telling things I remember from that session in Solihull was the discussion about how memory is like two bookcases full of books. If we shake those bookcases, books from different levels fall out. They are never really interconnected; they simply lose their place, and over time more books are lost.

People’s progress down the road of dementia can be fast or slow. Something that was talked about at that session was the idea of “living well” with dementia, which seemed an odd choice of words at the time. We, as a society, have to ensure that we enable people to live as well as possible with dementia. As part of that, we need tailored care packages. Solihull CCG, for example, is leading the way with its virtual wards and trying to help people through step-down facilities from the local hospital. We had a major campaign in Solihull to save ward 10, a specific step-down facility. That led to the creation of a new facility, Ardenlea, over the road, which looks after individuals who are coming out of hospital at the most vulnerable time, when they already have the mighty battle of dementia on their hands.

We need to stop providing care and services in silos, as my hon. Friend the Member for North West Hampshire (Kit Malthouse) said. We need to stop thinking that this is someone else’s responsibility. Dementia care in our society is everyone’s responsibility—that means Members of Parliament, GPs, nurses, healthcare professionals and wider society. We must consider how shops are designed, how we design support services and how we talk to people and interact with them. We need to get dementia-friendly and get on top of this issue, because it is going to be the issue of the 21st century.

Bowel Cancer Screening Age

Julian Knight Excerpts

Tuesday 8th March 2016 Westminster Hall

[Caroline Ansell]

My hon. Friend makes an apposite point, and I hope that, in a small way, this debate, underpinned as it is by personal testimony, plays a part in raising awareness. As I said at the beginning of my speech, the disease takes the second highest number of lives of all cancers.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate. As someone who lost both of his grandfathers to bowel cancer, I think that early diagnosis is absolutely key. However, it is not just a case of screening at a specific age; it is about spotting the signs. I have friends who have developed this dreadful disease in their 30s. It is all about spotting the key signs. One of those friends went on, after recovery, to carry the Olympic torch and is now a champion for young people with bowel cancer. Will my hon. Friend go on to talk about spotting the signs and not just about screening?

[Caroline Ansell]

My hon. Friend makes a very worthy point. He brings glad tidings, too, that bowel cancer can be beaten and that those who have suffered from this terrible condition can go on to lead rich and fulfilling lives—which, in some cases, bring them to Parliament.

End of Life Care

Julian Knight Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Mr Robert Syms (Poole) (Con)]

This is a timely debate. We do not discuss this matter regularly, and I pay tribute to the Health Committee for producing its report. Having looked at the Official Report, I understand that the last debate on the subject took place in 2011. That debate concentrated on Great Yarmouth and Waveney. The subject deserves a lot more discussion because it affects many of our constituents and their families. If things go wrong at the end of life, it can leave the surviving partner and the family with a great sense of guilt. All of us have had people come into our surgeries who cannot get over the way in which a relative has been treated in these circumstances. It is absolutely vital for the wellbeing of the families that the Government get this policy right, so that they can move on and recover from the experience. Over the years, I have observed fantastic fundraisers for hospices in the community, and this is one area where the charity sector comes into its own, with rugby matches, cricket matches and jamborees. These things do get public support but it is sometimes a hard ask to keep raising the sort of money that they do. I therefore welcome the fact that the Government have increased the funding, although I think it is right and proper that they do not overdo it, because sometimes Government money can drive out money raised by the private sector.

[Julian Knight (Solihull) (Con)]

My hon. Friend is making a powerful contribution. Will he reflect on the importance of not only the care of the patient, but the care of the patient’s family at this most difficult time? The new state-of-the-art Marie Curie hospice in Solihull provides not only very good patient care, but a real home from home for relatives and patients at this most acute time.

Cancer Drugs

Julian Knight Excerpts

Tuesday 19th January 2016 Westminster Hall

[Pauline Latham]

It is incredibly important time. Any extra few weeks in such a situation is so valuable to those patients.

In answer to a written question submitted by my hon. Friend the Member for Crawley (Henry Smith) on 10 December 2015, the Minister said:

“NHS England has advised that a draft treatment pathway for patients with multiple myeloma, which takes into account the…impact of treatments removed from the Cancer Drugs Fund (CDF), is currently being finalised.”

I hope he is able to update us today on when those proposals might be published. My constituent and his family would like to know what options, if any, he has.

It is not only drugs for rarer cancers that have been hit. Drugs to treat breast cancer, bowel cancer, prostate cancer, leukaemia and other blood cancers, some gynaecological cancers and cancers that affect the central nervous system have all been removed, which probably amounts to thousands of patients who are now unable to receive treatment. That is absolutely devastating for patients and their families, as the chance to prolong life for a few more months or years has been diminished.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate and on the passion she is showing in putting her case. What does she think about NHS England’s proposal that the Cancer Drugs Fund should become a managed access fund that pays for promising new drugs for a set period before the National Institute for Health and Care Excellence decides whether the drugs should be routinely available on the NHS? Does she think that is a good idea or not a good idea?

[Pauline Latham]

I will come on to that later. If my hon. Friend does not mind waiting a few moments, he will hear what I have to say.

Delisted drugs are still potentially available on an individual basis via an individual funding request. Is the Minister able to say how many of those requests have been successful as a proportion of all requests, and for which drugs? I know he is working extremely hard on this matter, about which he cares passionately, and I thank him for that.

Although there has been recent progress, the UK still lags behind most other developed nations on use of and access to cancer drugs. In fact, we do not do as well on outcomes for cancer as many other nations. Nationally, cancer is still the largest killer, accounting for 29% of all registered deaths in 2014, the last year for which Office for National Statistics figures are available. Tracking the history of the Cancer Drugs Fund, a fund for which I have repeatedly supported investment, we can see that it has been on a rocky road to get to where we are now. Drugs have been removed, and the general consensus is that the fund has become unsustainable.

For the first three years, the fund underspent its budget—the opposite problem from the one we have now. In fact, between October 2010 and March 2013, the 10 strategic health authorities that administered the fund underspent by £128 million, or 28% of the fund’s total budget. That is a lot of money that could have been spent treating cancer patients. There was significant geographic disparity in the use of the fund. In the east midlands, which covers my Mid Derbyshire constituency, the number of patients supported by the fund per 1,000 new cancer cases in 2012-13 was just 27. That was the lowest figure in the country and represented a failure of the East Midlands strategic health authority, which was then in control of administering the fund, to promote its use to clinicians and patients. Several of my constituents died prematurely because they were refused funds for the drugs they needed when the fund was always underspent, despite pleading from me on behalf of people who were spending their own money on those drugs.

Since NHS England and Public Health England took control of the fund, the change has been dramatic. Having one central authority administering the fund removes the geographic differences whereby treatment authorities were promoting the fund and treatments at different levels. The effect is such that patient numbers skyrocketed. As last year’s high quality National Audit Office report on the Cancer Drugs Fund notes, the number of patients approved for funding increased by about 30% each year from 2011 to 2015, which should be viewed as a success for patients. Thanks to the fund, 84,000 patients have been able to access treatments that they would otherwise have been denied. The success is such that, in 2014-15, almost one in five patients started a new cancer drug through the Cancer Drugs Fund. What was meant to be a temporary measure is now a mainstay of cancer treatment in England.

Obviously, such growth comes with a price; the cost of funding the scheme spiralled out of control. Following the Government’s decision to extend the fund to March 2016, NHS England increased the annual budget from £200 million to £280 million for 2014-15 and 2015-16. In January 2015, it increased the budget for 2015-16 again, to £340 million, meaning that the fund now has an expected lifetime budget of £1.27 billion.

Was taking drugs off the list a solution to the fund’s problems? It was certainly the easiest way to regain control of costs, but it hit patients hardest rather than solving the problems with NICE’s approval processes, which was the underlying reason for the fund’s creation. The rapid response to regain control of the budget also means that no new treatments were added to the Cancer Drugs Fund from January 2015. The decision to keep drugs on the fund’s list or remove them was based on their clinical effectiveness and cost, but from the start the fund did not keep records of treatment outcomes. Surely it is hard to obtain a full understanding of drugs’ full efficacy if a full analysis is not available by which to judge them. The failure to collect data on patient outcomes until July 2015 is truly disgraceful and undermines any proper evaluation of the fund’s success.

I am particularly attracted to the question asked by the right hon. Member for Don Valley (Caroline Flint) during a Public Accounts Committee oral evidence session on the Cancer Drugs Fund last year. She asked why the Department of Health did not

“knock the heads of the SHAs together to ensure that there was some sort of common collection of data”,

instead of just recommending it. Fortunately, NHS England and Public Health England have resolved the problem—today, every new Cancer Drugs Fund patient is automatically identified on the systemic anti-cancer therapy database—but five years to fix a problem is far too long, and a failing of the fund.

Although data outcomes are now mandated, the rate of return has been far from perfect. In 2014-15, many records lacked important data. Most shockingly, 93% of patient records submitted did not have an outcome summary. Will the Minister inform us whether there will be penalties for trusts that consistently fail to produce the required data on cancer treatments?

The lack of data collection also undermines efforts to establish whether the price paid for drugs is equal to their outcomes. As the chief executive of the NHS admitted himself, the NHS has not been good enough at negotiating a price for drugs. Many drugs have been delisted because they were deemed too expensive. The drug Imnovid, which would benefit my constituent Graham, costs the NHS £115,000 a year, compared with £90,000 in Spain.

The failure to negotiate the best price was demonstrated by the fact that when threatened with removal from the list, some manufacturers were able to offer a lower price for their drugs. I understand that Imnovid was already offered at a discounted price, but I cannot blame drug manufacturers for not immediately offering the lowest price that they can afford. They need profits to use on research and development and to show value for their investments. Will the lack of positive outcomes from the price negotiations be addressed in the new CDF proposals? Also, can the Minister provide information on the number of negotiations between NHS England and drug manufacturers that have been positively resolved, and which drugs they relate to?

The new Cancer Drugs Fund proposals aim to distribute more evenly the financial risk of placing a drug in the fund, but the Rarer Cancers Foundation strongly suggests that the NHS has not been flexible in negotiating with pharmaceutical companies on value propositions for treatments in the fund. Can the Minister confirm whether NHS England rejected multi-treatment cost reductions from drug companies because they would have fallen outside NHS England’s standard operating procedure? Likewise, from evidence given to the Public Accounts Committee, it is clear that some companies have offered financial schemes stating that if the medicine does not work as expected, its cost will be returned to the NHS, but have been turned down in favour of straight discount schemes. Together, such schemes would offer a win for the taxpayer and would have allowed more drugs to be made available for the fund.

My final comments concern the proposed reforms of the appraisal process for drugs on the fund, which under current plans will be put solely in the hands of NICE. The proposal is that the CDF should become a managed access fund for new cancer drugs, as my hon. Friend the Member for Solihull (Julian Knight) mentioned, with clear entry and exit criteria. It would be used to enable access to drugs that appear promising but for which NICE indicates that there is insufficient evidence to support a recommendation for routine commissioning. At the end of the period, the drug would go through a short NICE appraisal, using the additional evidence.

For those looking for treatment for rarer cancers, such as myeloma, there are a number of questions about the new proposals that need to be addressed to ensure access to new treatments. As I understand it, under the new proposals, only a limited number of patients will have treatment funded through the CDF, and the industry is expected to fund additional patients. The consultation sets out NHS England’s proposal to limit funding for each drug on the CDF to the number of patients required to be treated in order to gain further evidence for use in NICE appraisal. The consultation is not clear what data NICE might require to be gathered during the CDF funding phase or the indicative size of patient populations. It is therefore difficult to assess whether the proposals would result in more or fewer patients getting access to treatment than the current arrangements.

What consideration is there of drugs for rarer cancers, which will have smaller patient pools creating only a small amount of data? Does the appraisal process have flexibility for such drugs? It is not clear whether pharmaceutical companies will be willing to fund patients for the 24 months required to allow data to mature if they think the likelihood of NICE approval at the end remains small. That could result in patients losing out once again on innovative treatments, or a situation in which drugs are put on the fund list and taken off in 24-month cycles, leading to uncertainty for patients about which drugs they have access to, just like the uncertainty caused by the current delisting.

I would like reassurances from the Minister that patients seeking treatment after the number of patients required to be treated in order to gain further evidence has been reached will not be denied treatment given to others in their situation. Does he believe that the changes to the NICE process outlined in the consultation are sufficient to ensure that more cancer treatments will receive positive NICE recommendations? Patients should be at the centre of any new decisions about the fund. Finally, I ask the Minister how the views of patients will be given greater weight in the new CDF arrangements.

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[Julian Knight (Solihull) (Con)]

It is a pleasure to serve under your chairmanship, Mr Streeter.

I congratulate my hon. Friend the Member for Mid Derbyshire (Pauline Latham) on securing this debate. She asked many pertinent questions that I will be very interested to hear the answers to today.

First, let us look at some good points for a moment, before I give what is quite a Solihull perspective on this issue. This is a unique fund in the NHS—it is the only one of its type. I believe it was originally intended to run until March 2014, with a projected budget of some £650 million. To date, spend has been around £960 million and 84,000 people have been treated under this fund, which is a real positive. This year alone, the spend will be £340 million.

In the main, therefore, policy makers have ensured that resources have been in place. However, perhaps at times the allocation of those resources has not been of the best. As my hon. Friend mentioned, the most recent assessments have seen 23 drugs being delisted, including Abraxane. Imnovid, which was particular to the case of my hon. Friend’s constituent, has also been delisted.

During the recent election campaign and since, Solihull’s breast cancer care group has been in regular contact with me about this issue and more widely about cancer treatment in the NHS. Hon. Members will be aware of the great sensitivity in my constituency about such issues, because unfortunately the rogue surgeon—Mr Paterson—carried out his work in the Solihull area. Many of the botched operations have added to the misery of my constituents and their cancer has been made far worse by his activities. Many people are still waiting for compensation and justice. However, what Solihull’s breast cancer care group and other patient groups in Solihull want is for the Cancer Drugs Fund to stay, and to be fair and transparent in its dealings. They do not want the fund to wither on the vine, but neither do they want it to become a free-for-all for drug companies. They understand that in a market we have to try to get the best possible price.

That is an important point, and I understand that there are still negotiations under way about all the drugs removed from the fund. Manufacturers have an opportunity to reduce the costs to the taxpayer. However, as my hon. Friend has pointed out, it is unfortunate that there are concerns about the negotiation process. Like my hon. Friend, I welcome the fact that data on every new Cancer Drugs Fund patient are now captured—it is quite an oversight that that was not the case before—but I am concerned at the failure to adequately negotiate good deals for drugs, particularly those to treat rare cancers, so I would add to her calls in that respect.

There are some other aspects of the Cancer Drugs Fund that need to be emphasised. I have been told that patients who are already in receipt of treatment should be able to continue with it. Individual funding requests are an option; however, as many Members present have probably discovered, they can often be ad hoc and very difficult to secure. I emphasise that point again to Ministers today.

Policy makers have to be careful that the Cancer Drugs Fund does not become a hostage to fortune to the drugs companies and their lobbyists. There must be sensitivity as well. The Cancer Drugs Fund is precious. I am concerned that although 84,000 people have benefited from it, there are 1,700 patients with blood cancer who may miss certain treatments because of the removal of the drugs. The top 10 drugs, it seems, account for 71% of all patients treated. However, there seems to be a black spot when it comes to rarer cancers and drugs that are more difficult to acquire.

There are options for change for the Cancer Drugs Fund. As has been pointed out, NHS England has proposed that the fund should become a managed access fund—effectively, providing drugs in advance of NICE deciding whether or not they should be routinely available. However, my hon. Friend has quite rightly raised issues in that respect.

In conclusion, whatever the future direction of the Cancer Drugs Fund, let us not forget that thousands of people are alive today and thousands of families still have their loved ones because of its advent. We must not lose sight of what the Cancer Drugs Fund has achieved. We must protect those achievements for the future, but be very mindful of the case laid out by my hon. Friend.

Sugary Drinks Tax

Julian Knight Excerpts

Monday 30th November 2015 Westminster Hall

[Paul Flynn]

I did see the programme; it was the Welsh segment of the “Politics Show”. That is why I find the account-giving of the view in Wales to be not plausible—Mark Drakeford is a splendid Health Minister.

Last year, a Daily Mail investigation revealed that the food industry lobby had been given unprecedented access to the Government. The Prime Minister hosted Coca-Cola, Mars, Nestlé, McDonald’s, Pepsi, Nando’s and Tesco. They were all welcomed to No. 10 Downing Street, and given big hugs no doubt—they are great pals. Those are the ones the Government are listening to, not the needs and the health of young children.

[Julian Knight (Solihull) (Con)]

Will the hon. Gentleman give way?

[Paul Flynn]

I will, but I am taking rather a long time.

[Julian Knight]

I thank the hon. Gentleman for giving way. Will he recognise that all the companies he just mentioned are major employers in this country and that it is perfectly right for Ministers, the Prime Minister and other Members of Parliament to meet with those companies so that they can put forward their views?

[Paul Flynn]

I am sure that there was a great outcry from the municipal and general torturers union in the South American countries when those countries were taken over by democratic states and the crafts of back-breaking and the pulling-out of fingernails were no longer in demand and people lost their jobs. But there was a benefit involved, and we cannot give this excuse about people being in employment.

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[Maggie Throup (Erewash) (Con)]

I rise to outline why changing our habits when it comes to sugar in our diet is so vital. It is not just the fact that high sugar intake is likely to result in obesity; what is important is the likely impact of obesity on our health. Those who are obese have a higher risk of heart attack or stroke, of cancer, of suffering from tooth decay and of developing type 2 diabetes. The long-term consequences of those diseases are what we need to worry about. For example, too many people are diagnosed with type 2 diabetes when it is too late—when their condition has already caused damage to their kidneys, their heart, their eyes and their blood circulation, which can lead to amputation. Those things have a life-changing and life-limiting impact on a diabetic patient. A secondary consideration is the huge cost to the NHS and social services. It is estimated that type 2 diabetes costs the NHS some £9 billion a year, which is 9% of its budget, as my hon. Friend the Member for Totnes (Dr Wollaston) mentioned. More devastating is the effect on the sufferer’s everyday life, and that is what leads me to believe that we need to do whatever is in our power to lower the incidence of obesity.

Those are the reasons why I was delighted when the Health Committee decided to hold its first inquiry of the Session on the subject of childhood obesity, and why I agreed to reform the all-party group on adult and childhood obesity, with its first meeting planned for the new year. During the Select Committee’s inquiry, we heard some compelling evidence calling for brave and bold action on obesity. I am sure that the majority of Members here today will have read the report. A sugary drinks tax is just one of the measures that we highlighted.

A few months ago I was against a sugary drinks tax, because I am against extra taxation, but the compelling evidence that we heard changed my mind. As a nation we are facing a massive obesity problem, and we need to be bold and brave in what we do as a result. I was originally against the tax also because I believe in choice, but consumers will still have choice. They will be able to choose between buying a sugary drink and paying the levy, and buying a drink with artificial sweeteners and not paying the levy.

The evidence that we heard dealt with both reasons why I was against a tax. According to the report by the Scientific Advisory Committee on Nutrition, “Carbohydrates and Health”, which was published in July, soft drinks as a single source represent 30% of added sugar intake for 11 to 18-year-olds. That is a huge amount. For four to 10-year-olds, soft drinks make up 16% of added sugar intake. Such data cannot be ignored or swept under the carpet. A sugary drinks tax would surely serve to change habits, reduce sugar intake and therefore play a part in reducing obesity. That would have a huge long-term impact on health.

[Julian Knight]

My hon. Friend is making an excellent speech. I do not wish to be accused of being in the pay of “Big Sugar”, which sounds vaguely like a ’70s wrestler, but does she agree that public awareness and better labelling of products are more important than anything to do with a sugar tax? Through them we can help to reduce sugar intake and change attitudes.

[Maggie Throup]

I think the wrestler that my hon. Friend is referring to is called “Sugar Daddy”, not “Big Sugar”. The Health Committee’s report said that it is not one measure that will make a difference but a whole range of measures, and education is one of those measures. I agree with him on that, for sure.

Some manufacturers are already reformulating their sugary drinks and their food items. I hope that the measures laid out in the Health Committee’s report and other recent reports will speed up the process for every food manufacturer. We want to have that nudge effect. As our report clearly states, the tax should not be for ever. It is a speedy response to a growing problem, and it can work as other measures kick in. When the time is right, the tax can then be dropped. It is vital that the money raised through such a tax is ring-fenced to tackle the obesity crisis in children.

[Maggie Throup]

I recommend that my hon. Friend reads the report. The evidence from other countries is that the implementation of a sugary drinks tax has reduced consumption considerably. It is important that we ring-fence the money from such a tax for education. As my hon. Friend the Member for Morley and Outwood (Andrea Jenkyns) said, education is extremely important. My hon. Friend the Member for Totnes, who chairs the Health Committee, also made that point. The money should not go into the general Treasury pot of money.

Just because we are focusing on sugary drinks in this debate, that does not mean that they are all we need to consider. In fact, if a sugary drinks tax was the only measure implemented, it would not be effective in tackling obesity and its long-term consequences, because sugar is not the only cause of obesity. Fats and other carbo- hydrates also play their part, as do lifestyles.

We have already talked about exercise. I recommend the Sky Ride project to everyone. It is about getting more people on bikes and caters for anyone, from the men in Lycra who want to cycle 100 miles a day to families. If we can get children on their bikes, getting more exercise, we can start to tackle the obesity problem in a fun way, which is a good way of doing it.

[Julian Knight]

My hon. Friend mentions cycling, and I concur; it is fantastic exercise, and its health benefits mean that regular cyclists live many years longer. Does she agree that one area we can improve is competitive sport in schools? Having more of that would bring about better health outcomes and better health among our young people.

[Maggie Throup]

I completely agree. I always enjoyed my competitive sports at school. I was a sprinter, and I played netball and rounders.

World Prematurity Day

Julian Knight Excerpts

Tuesday 24th November 2015 Westminster Hall

[Chris Heaton-Harris]

I thank the hon. Gentleman for his intervention. He is absolutely right, and I will come on to that later. I, too, have had a lot of contact from my constituents on this issue. In fact, at my very first surgery—or advice centre—as a Member of Parliament back in 2010, a lady called Catherine Allcott came in, and it is through her that I got involved with the charity Bliss. I asked whether she would mind if I read out a couple of paragraphs about what happened to her and why this issue is so important to so many parents such as her and her husband, Nigel. She very kindly agreed, so to set the scene for Members, I will read out Catherine and Nigel’s story.

Their twins, Luke and Grace, were born in the early hours of the morning of 4 May 2006, at 26 weeks’ gestation. The twins’ premature birth caused serious health problems, including brain bleeds, suspected meningitis, necrotising enterocolitis and heart problems. Although Grace is now a happy, healthy child, sadly, Luke died nearly four months after being born. Catherine tells me:

“One of the things we found hardest to deal with at that time was the fact that there was often only one nurse in the NICU”—

the neonatal intensive care unit—

“usually to three or four babies.”

She was on the unit so much because of the issues she was experiencing and because she felt so uneasy about that situation, and that is why she has been involved ever since.

Catherine says:

“When I was there sometimes I would have to help the nurse on duty by running into the next room to fetch help. I often wondered what happened when I wasn’t there. When the nurses would tell me not to spend so much time on the unit, what was I to do? Tell them I didn’t trust them with so many babies to look after?”

She goes on to say:

“As a committed campaigner for high quality neonatal care I am saddened to think that in ten years very little has changed in terms of staffing units safely and effectively. How many babies have died or now endure life changing illnesses because there simply weren’t enough nurses to care for them appropriately, and what cost is that to the NHS?”

Catherine’s story is really significant. She took me on to the Gosset ward—the neonatal ward—in Northampton general hospital. I was told by a junior doctor who works there that it has all completely changed; it has been refitted and is a much nicer space. There is no doubting the passion and the care that the staff on the ward give, but equally, there is no doubting the pressure that they are under and the fact that we can help to improve the conditions for them.

World Prematurity Day takes place on 17 November every year—we have just missed it, but this was the closest time to World Prematurity Day that I could get for the debate. The day is aimed at raising awareness of the issues facing premature babies. It is co-ordinated by a global coalition of charities and groups, including Bliss, each year.

The global statistics are quite astonishing: 15 million babies are born prematurely worldwide each year—that is 29 babies every minute, and one in 10 of all babies born—and in the UK, that equates to nearly 60,000 babies born prematurely each year. Bliss estimates that 113 babies who need specialist care to help them survive and thrive are born every year to parents living in my constituency. About 61 of those babies are born prematurely, at under 37 weeks’ gestation. Those born at under 32 weeks’ gestation are considered very pre-term. Those babies are born before they are fully developed and often spend the longest time in neonatal care.

Obviously, most premature births have no clear cause, whereas others are induced due to medical necessity. There is evidence that risk factors for premature birth include smoking, drinking alcohol, substance abuse, low or high maternal age, infection, high blood pressure and multiple births. There is lots of research—although we could always do more on this subject—showing that socio-economic factors also have an impact.

I want to underline the fact that prematurity is a global issue, which is why we have World Prematurity Day. It is the world’s biggest cause of death for young children. Of the 15 million babies that are born prematurely worldwide each year, more than 1 million do not survive. We are fortunate in the UK to have the resources to care for all babies born prematurely, but there is a long way to go before babies and their parents are given the best possible chance.

[Julian Knight (Solihull) (Con)]

I congratulate my hon. Friend on securing this important debate and on his unstinting work for the families of those who are facing the challenges of a premature birth. Often, one of the most acute problems facing families in that situation is meeting the costs of constant hospital visits. Will he join me in calling on all hospital trusts across the country to follow the Government’s guidelines on hospital parking charges, which would see concessions and even free parking for families of babies who often stay in hospital for months on end?

[Chris Heaton-Harris]

I concur with my hon. Friend on that matter. I have heard many a story about that. I have also visited the John Radcliffe hospital to see its neonatal unit and talked to parents. In Northampton general hospital’s case, there is a way for someone to get their parking charge back, although actually, if they are the parent of a premature child who is not doing very well, the last thing they think about is where they are going to park and how they are going to pay for the ticket. The grandparent of a baby born prematurely who is not very well does not think about the parking charge when they go in, but it is one of their worries when they leave. We need to do better on that issue and spread some of the best practice that exists in the NHS when it comes to parking charges. Those charges seem like a minor element in the scheme of things, but they are such a big deal to parents, grandparents, friends and family—the support mechanism that builds around a family when a baby is born prematurely and especially when a baby is born unwell. My hon. Friend is completely correct to raise that issue.

As I said, we have a long way to go before all babies born too soon have the best possible chance of survival and of living a good-quality life. The UK mortality rate for babies is quite high for a western European country. I have previously raised in this place an article in The Lancet, going back probably five years now, saying that we ranked 33rd of the 35 top western countries in stillbirth mortality rates. We were in a very poor place, and I struggle with the massive regional variation across our country. I would like to think that we have best practice that spreads across the NHS, but there will always be somewhere that has a number of staff sick and where there is pressure on a unit. However, there should not be a massive regional variation. The Lancet article said that stillbirth was a third more likely in the east midlands than in the south-west, so there are significant issues to deal with. Surely that rate should be equal across the piece.

If the UK could match the mortality rates achieved in Sweden and Norway, for example, the lives of at least 1,000 babies could be saved every year. One thousand babies—that is such a significant statistic. I have met parents of stillborn children and know what they have gone through. Some 1,000 babies each year could be saved with best staffing and better equipment, although the issue is not so much about resources. It is about spreading throughout the whole NHS the best practice that I have seen in various hospitals up and down the country. Concerns about variation in care were highlighted in this year’s Bliss baby report, which found that two thirds of neonatal units do not have enough nurses and two thirds do not have enough medical staff to meet Government standards for safe, high-quality care.

We must talk about this significant issue and raise awareness of it. I sat on the Public Accounts Committee for five years and raised it there when we had the chief maternity officer in front of us, because we should talk about such issues whenever we get the opportunity. I know that those working in the NHS get it—I have spoken to all sorts of people from the top to the bottom of the NHS, and they obviously all care passionately for the parents and want the best outcome for their babies—but we have a long way to go to improve the care available to mothers, fathers and their babies. We need to raise the matter at every opportunity, and when I did so in the Public Accounts Committee the chief maternity officer took me to one side afterwards and said, “We are really working hard on this. This is an issue that we know we can do better on. The Government have announced a strategy to reduce infant mortality by, I believe, 50% by 2030. That is obviously welcome and recognises that we could and should be doing better.

I want to raise a few points about the 2015 baby report by Bliss, which has done so much work in this area. I know that plenty of other charities do fantastic work, but Bliss is one of the biggest, and I have worked closely with it through my constituents, the Allcotts. I very much respect its work. The report, entitled “Hanging in the balance”, found that funding shortfalls, national skills shortages and problems with training and recruitment are leaving many neonatal units without the staff they need to meet Government and NHS standards for safe, high-quality care. It states that 64% of neonatal units do not have enough nurses to meet national standards of safe staffing levels; two thirds do not have enough specialist nurses; two thirds do not have the medical staff they need to meet national standards; and 41% have no access to a trained mental health worker—one of my hon. Friends will raise that point, so I will not go into it in detail—leaving parents and staff without the vital support they need to help them cope.

I emphasise that it is not only parents who need help. When I went to the John Radcliffe hospital, I unfortunately went on a morning when three babies had died the night before. None could have been helped, but although the staff are professional people who know exactly what they are doing and the situation they are working in—they have a huge passion for their role, deliver a huge amount of care and become attached to families in a big way—it was palpable that the unit was feeling down that morning. In fact, I felt that I was getting in the way, so I left as soon as I could. It is not just parents who need trained mental health workers available to them; the staff also need them to help them cope in such situations.

There are insufficient funding accounts for three quarters of nursing shortfalls in neonatal units, and 72% of units struggle with at least one aspect of nurse training and development. From all the time I have been involved with the matter, especially when seen through the glasses that I have put on as Daventry’s MP and from standing beside Catherine Allcott on Gosset ward at Northampton general hospital, I know that attracting people to go into this area of nursing is quite a job. Those who go into it find it remarkably rewarding, but it is also a remarkably tough role. That is one reason why vacancies in this field of nursing specialism have historically been high, and we must address that. The rewards are massive, but occasionally there are unbelievably bad days at work.

We should have a whole host of ambitions nationally. I want to be able to look my constituents, Catherine and Nigel, in the eye and say that I have done everything I possibly can to ensure that what happened to them does not happen to anyone else.

--- Later in debate ---

[Julian Knight]

My hon. Friend touched on the question of divorce following the sad death of an infant. I wonder whether she would like to reflect on the need for more marriage guidance and support structures for those who face that awful situation, and more widely on how working towards a seven-day NHS will help to alleviate many of the problems that come about with premature birth.

[Victoria Prentis]

Turning first to the difficulties in relationships, it is true, as I have found out personally and with great difficulty, that fathers and mothers grieve differently. The interface between two very unhappy people can be, as I know from personal experience, very difficult indeed to manage. I am fortunate that my husband and I had been married for a long time before our son died, and we were able to hold it together. We also come from very stable families who were able to provide us with a great deal of support, as was the Church. It is an enormously difficult area for people, however. On the seven-day NHS, yes, it is always terrifying to look at the units at weekends with lower numbers of staff on duty, and to wonder how those people are coping.

I return to poor mental health. It is important to focus not only on the parents but on the babies. From my work with the Parent-Infant Partnership UK, I know that long-term difficulties emerge from a lack of bonding between depressed parents and their children. The sad by-line “two is too late” is substantially true. If prematurity is not to have a multi-generational impact, early action must be taken quickly.

There are simple, practical solutions that would ease the strain on families. My hon. Friend the Member for Gillingham and Rainham (Rehman Chishti) has been working hard to ensure that more beds are provided in mental health mother and baby units nationwide. We heard, at an excellent lecture that my hon. Friend hosted last week in this place, from a psychiatrist who admits women from Cornwall to his unit in Birmingham. Travelling puts additional burdens on families under strain. Probably 50 or 60 more beds are needed nationwide to meet the commitments we have made to give mental health parity of esteem.

Other associated health professionals need to be in at the off, working with premature babies and their families. Professionals such as physiotherapists, occupational therapists, dieticians and speech and language therapists form a vital part of the care that premature babies need. Such care can have an enormous effect on development and quality of life. I will give the example of a child who is well known to me—a little boy born very prematurely to well-informed parents, who were not told about the importance of physiotherapy to his development. That must be seen in the context of the fact that 20% of premature babies have a cerebral palsy diagnosis. That little boy is now 10, and, rather than playing football with his friends, he has had a punishing sequence of operations and casts on his legs. His parents were told at their last appointment that physiotherapy from babyhood might have alleviated the need for all that. According to Bliss, 43% of neonatal units had no access to an occupational therapist, even via referral to another service, and 12% of units had no access to a speech and language therapist. As ever, early intervention saves trauma, time and money.

The Government have wisely seen the need for co-ordinated care for the elderly, with named GPs and someone in charge of the entire patient experience. So often, we speak of the need for a joined-up approach to end-of-life care. Only a few weeks ago, the Minister responded to a debate on palliative care and spoke of the importance of integration between sectors. We are making great progress on that front; the Economist Intelligence Unit recently reported that we have the best palliative care in terms of access to services and the quality of those services. Perhaps the time has come to look at the needs of premature babies and their families as a whole and to do some joined-up thinking to ensure our neonatal care is also the best in the world.

Care Homes (Regulation)

Julian Knight Excerpts

Wednesday 4th November 2015 Westminster Hall

[Peter Heaton-Jones (North Devon) (Con)]

I beg to move,

That this House has considered regulation of care homes.

It is a pleasure to serve under your chairmanship this afternoon, Ms Vaz. The purpose of today’s debate is to highlight what I believe to be serious shortfalls in the current system for the regulation, inspection and investigation of private care homes and nursing homes. At the moment, I believe, quite simply, that we are letting people down—the people who are least able to speak up for themselves. They are the estimated 300,000 older people who currently live in around 17,000 registered care homes in England. Their average age is 85 and a significant proportion suffer from dementia. They are people largely without a voice and that, I believe, needs to change.

Two and a half years ago, some time before being elected to this place, I was contacted by a constituent in North Devon. He told me the very moving story of his mother, a former resident at a private care home, who had died in 2009. Her son believed then, and still believes to this day, that there are serious questions about the care that she received in the final months and weeks of her life.

In the following years, my constituent has pursued all the avenues open to him to have his mother’s case fully investigated. Invariably, though, he hit a brick wall, so he began to look beyond his individual case at the more general question of how care homes are regulated and complaints investigated. He came to the conclusion that the current system is simply not fit for purpose. It is a conclusion that I share, which is why I sought today’s debate.

Let me stress that this debate is not about my constituent’s individual, specific case. I do not seek to reopen it nor to raise any questions about the standard of care in that establishment today, six years on. Indeed, last night, I spoke to a senior director at the home’s parent company to give her that assurance, which she accepted. However, my constituent’s individual case is the starting point. That is how it must be, because at the heart of this issue are people, and we must always remember that when we talk about systems, institutions and processes. It is the people who matter, and at the moment, I believe that we are letting them down.

To seek evidence for that, we have to look no further than the website of the Care Quality Commission, the body that currently has responsibility for the regulation and inspection of care homes. Today, that website tells us that of the 700 care homes most recently inspected by the CQC, a staggering 44% have been rated as either “Requires improvement” or “Inadequate”. There is no reason to believe that those figures are unrepresentative of the sector as a whole, so that means that four in 10 of all establishments are not currently reaching the required standard. Surely the purpose of any system of inspection and regulation must be to drive up standards. Those figures alone, therefore, suggest that currently the system is simply not working.

Let us look at that system, because it has undergone some significant changes in the recent past, and indeed it still is undergoing change, even as we speak today. It seems to be a process, however, that in its fluidity is encountering considerable difficulty. We are in a flexible mode, I think it is fair to say, as far as the CQC’s arrangements are concerned.

In June 2013, the CQC issued a consultation called “A new start”, which proposed a whole new approach to inspection across all sectors, including care homes. That approach was confirmed in October two years ago, and the new provider handbook for residential care came into effect from 9 October last year. In April this year, the CQC introduced a special measures regime, as it was called, for failing services. However, it is clear that there are problems in the implementation of some of those new processes.

The CQC’s most recent publication, which was published as recently as 28 October, is called “Building on strong foundations”—I have a copy here, hot off the press. It sets out

“some of the choices it faces in responding to changes to how health and social care is delivered”.

Well, it must face some pretty tough choices, because it is pretty clear that what it seeks to do in changing its processes is not fully working.

Let me quote an article from The Guardian, which I admit is not one of my usual media choices. The columnist, Michele Hanson, wrote on 28 September this year:

“Do you fancy being a CQC inspector? You can. Anyone can. You don’t have to be a social care expert, just have a six-week induction course. And luckily, once you start inspecting, you don’t have to inspect everything. You can just inspect a couple of the Key Lines of Enquiry (KLOE), because they’re not all mandatory.”

The article goes on to say:

“You can leave out management of medication, or quality of life, or complaints, and you can inspect different KLOEs in different homes, which means you can’t compare”

what is good and what is not good. She concludes:

“Which is perhaps why our local care home, rated ‘excellent’ by CQC”

was exposed on the television a short time afterwards

“over the fearful abuse of one resident”.

Clearly, something is wrong with the system. What is the cause of that? It seems, as I said, that the CQC has encountered particular problems recruiting sufficient expert inspectors. In July this year, the National Audit Office found that just 9% of care homes have so far been assessed, because of a shortfall of 160 inspectors. Indeed, the February 2016 deadline to complete the work has now been pushed back to next October.

I have a great deal of respect for the many hard-working staff at care homes and at the CQC. Those at care homes in particular receive low wages for a job that I would never want to do. I also have some sympathy for the many care home providers who are having to cope with the ever-changing regulation regime. The goalposts are constantly moving, and it is costly for those care home providers to comply with the system. Care homes have to pay to be registered by the CQC, and, depending on how many residents they have, the cost can be anything from £276 to more than £13,000 a year. It is fairly obvious where those costs are going to be passed on to.

Let us make no mistake. In cases where something goes wrong, it is the care homes and the people who own and manage them who bear the ultimate responsibility for getting things right, but the regulatory framework that we—the state—impose has to help them, encourage them, and yes, force them to improve. At the moment, it does not.

[Julian Knight (Solihull) (Con)]

My hon. Friend is making a powerful case and is clearly a strong advocate for fairness and transparency in the care home sector. On whether providers are being managed in the right way by the CQC, is not the point that they have said to Department for Business, Innovation and Skills that they feel that they are being asked to provide paperwork and not care, and that there is sometimes duplication between the local authority and the CQC in how the sector is regulated?

[Peter Heaton-Jones]

My hon. Friend makes an extremely good point. This must be about the elderly people who are in the care homes. They must be the entire focus of those who work in, manage and own those care homes, not the bureaucracy and the paperwork.