PACE Trial: People with ME

John Howell Excerpts

Tuesday 20th February 2018 Westminster Hall

[Carol Monaghan]

Absolutely. In fact, I will be calling for the patient voice to be heard in any treatments.

Calls to publish the raw data—basic protocol in good research—were ignored. Queen Mary University spent an estimated £200,000 on keeping the data hidden. Finally, after a long battle, patients won a court order to force the PACE authors to release the data. It was discovered that the authors had altered the way in which they measured improvement and recovery, to increase the apparent benefit of the therapies. Re-analysis showed that the improvement rate fell from 60% to 21% and the recovery rate fell from 22% to just 7%.

The method of patient reporting has also been questioned. As one participant says:

“After repeatedly being asked how severe...my symptoms were—in the context of…it’s just me not trying hard enough...I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough. When I was completing questionnaires...I remember second guessing myself and thinking for every answer: ‘Is it really that bad? Am I just not looking at things positively enough?’”

[John Howell (Henley) (Con)]

I thank the hon. Lady for securing this debate. The PACE trials have been roundly condemned by many scientists as being totally inappropriate. Does she have a feel for what an appropriate trial might have found?

[Carol Monaghan]

Yes. I will come on to how an appropriate trial could be done. First, I will mention the self-reporting that was a part of the trial. Questionnaires provided the data and measures of success. There were no physiological or scientific measurements. For patients the damage was done. I am a science teacher by profession and I always told my pupils that there are a number of stages to any scientific investigation: “Start with a hypothesis. Decide how you will test this theory, what measurements you will make, how you will record your results and how you will use these results to draw your conclusions. Those conclusions, which might be different from the original hypothesis, must be based on the evidence you have gathered.”

That did not happen in the PACE trial, which relied on patient self-reporting, rather than measurable physiological parameters. Furthermore, when the results were not as expected, rather than revise the original hypothesis, the investigators simply changed the success criteria. Thus patients participating in GET who had deteriorated during the study were considered recovered.

There are, of course, ways of measuring the physiological impact of exercise. The two-day cardiopulmonary exercise test can objectively measure post-exertional malaise. We know that a person with ME can perform adequately—sometimes even well—on the first day, but can have greatly reduced cardiopulmonary function on the second. The test requires the participant to exercise on a static bicycle, and allows data on oxygen consumption, workload and gas exchange to be measured. Two identical tests, separated by 24 hours, must be carried out to properly measure the impact of exercise. Results from a single test could be interpreted as a lack of fitness. Two tests change that to something quite different. A healthy person will perform better the second time; an ME sufferer will most likely be worse.

Of course, the failure of the PACE trial to do that could simply be put down to bad science, but unfortunately I believe that there is far more to it. One wonders why the DWP would fund such a trial, unless it was seen as a way of removing people from long-term benefits and reducing the welfare bill.

Acute and Community Health

John Howell Excerpts

Thursday 8th February 2018 Commons Chamber

[Stephen Barclay]

My hon. Friend is right. Professor Ted Baker, the chief inspector of hospitals, has drawn attention one of Dr Kirkup’s findings, which is that the CQC is now in a much better position to challenge and fine those responsible for unsafe care and poor standards. That also reflects the excellent work that Professor Baker and his team have been doing to ensure that inspections become much more rigorous in identifying issues such as those that we have been discussing today.

[John Howell (Henley) (Con)]

I am a member of the Justice Committee, which has taken a particular interest in Liverpool prison. Will my hon. Friend assure me that there will be a review of the suicidal potential of prisoners to ensure that the systems are right?

[Stephen Barclay]

My hon. Friend is right to allude to the importance of learning lessons, especially given that there are many vulnerable people in prisons, and given the risks that accrue as a result. Yesterday I spoke to the Under-Secretary of State for Justice, my hon. Friend the Member for Bracknell (Dr Lee), who is responsible for offender management issues, and the Prisons Minister, my hon. Friend the Member for Penrith and The Border (Rory Stewart), visited Liverpool prison last week. I know that they have both taken a great interest in the report, and that they will take any further action that is needed.

NHS Blood Cancer Care

John Howell Excerpts

Wednesday 17th January 2018 Westminster Hall

[Henry Smith]

My condolences to Emily’s family. There are all too many examples of young people passing away from blood cancer. I pay tribute to Emily’s mother for a fine legacy. It is sad that a young life has been lost to this condition, but wonderful that so much good work has been done as a result. I would be grateful if the hon. Gentleman passed on my best wishes to them.

[John Howell (Henley) (Con)]

I congratulate my hon. Friend on the excellent work he is doing in this sphere. Blood cancer is a bit of a hidden cancer. If someone has a solid tumour, it can be seen and treated and they can see what is happening with it, but blood cancer is difficult to detect. What is he doing to encourage early detection?

[Henry Smith]

My hon. Friend anticipates some of my remarks in a few moments’ time, but he is absolutely right to use the words “hidden cancer”. Blood cancer is very different from solid tumour cancers—that is a key point and problem.

I was going to say that, from four o’clock, right hon. and hon. Members are very welcome to come along to Strangers’ Dining Room for the launch of our report.

NHS Winter Crisis

John Howell Excerpts

Wednesday 10th January 2018 Commons Chamber

[John Howell (Henley) (Con)]

I do not want to go through the increase in the number of operations carried out by the NHS, or to describe the enormous pressure of the numbers of people being seen by the NHS—plenty of other Members have already done that. I wish to concentrate on delayed discharges of care, which are an important factor not only when it comes to increasing the throughput of people in the health system, but in ensuring that people do not go into hospital in the first place.

In Oxfordshire, we have addressed delayed discharges of care in two ways, as part of our future planning for the NHS. First, with respect to the hospital in the town of Henley, I have been among those who have been active in trying to achieve the right balance with social care by ensuring that there are no beds in the hospital. There are beds in the neighbouring care home for those people who urgently need to stay, but all the emphasis is on ambulatory care—the treatment of patients in their own home—on which I have worked closely with the Royal College of Physicians. More and more patients now understand that they can get the right sort of treatment in their own homes and do not have to spend time in hospital. The approach has been taken on the best of medical advice and I am grateful to the doctors who have supported it. I invite Ministers to come to see for themselves how the hospital works.

Secondly, we do cross-party work in the county involving all MPs who represent Oxfordshire. I chair the group that has a relationship with the clinical commissioning group, not so much to hold it to account, but to ensure that it is focused on the things on which it says it will focus. One of the CCG’s great achievements is its focus on delayed discharges of care. I shall cite a couple of the figures so that Members will understand the CCG’s enormous achievement over the past year in planning for the better treatment of delayed discharges of care. At the end of December, the number of Oxfordshire patients whose discharge of care was delayed was 96, whereas the number in May had been 181. That is a magnificent achievement, as the number of delayed discharges of care has been almost halved. When Ministers hear about that half, they should understand that it is not a half increase but a half decrease in the number of people whose discharge of care was delayed. That improvement has been achieved by making sure that the right resources are in place for those patients who need them to return home. It has not happened because people are going home without the support that they need.

Finally, on the story in The Times this morning about Churchill Hospital, I have with me a letter from the hospital saying it has not implemented any changes to cancer treatment whatsoever. I am happy to provide a copy of that letter to the Library so that Members can read it.

NHS Winter Crisis

John Howell Excerpts

Monday 8th January 2018 Commons Chamber

[Mr Dunne]

A significant amount of funding—some £3.4 million—was made available to the hon. Lady’s area. Reconfiguration proposals are being driven by the STP process. It is down to local authority leaders and local NHS leaders and clinicians to determine what is the best configuration of services in their area.

[John Howell (Henley) (Con)]

In Oxfordshire, considerable effort is being put into growing home-based health and social care systems. Does the Minister accept that that will solve the problem of delayed discharges of care by preventing them in the first place?

[Mr Dunne]

I agree that prevention is an important part of the long-term solution to improve healthcare outcomes for the population. I believe we are on the cusp of some significant technological advances that will allow more treatment to take place at home and more diagnostic tests to be taken without the necessity of attending acute facilities. Oxfordshire is a good leader in that.

King’s College Hospital Foundation Trust

John Howell Excerpts

Tuesday 12th December 2017 Commons Chamber

[Mr Dunne]

I share the hon. Lady’s support for the clinicians and professionals working in her trust, who are doing the best job they can in admittedly challenging circumstances. I do not accept her characterisation of a lack of capital provided to King’s. I have been there myself and seen some of the building work going on. I am happy to look at the circumstances surrounding what happened in 2013, but they are not as relevant to today’s situation as the way the trust’s financial management has deteriorated in recent months.

[John Howell (Henley) (Con)]

What has NHS Improvement said about this, and what has it recommended that King’s should do?

[Mr Dunne]

As I have indicated, the chief executive of NHS Improvement said yesterday that no other trust

“has shown the sheer scale and pace of the deterioration at King’s. It is not acceptable for individual organisations to run up such significant deficits when the majority of the sector is working extremely hard to hit their financial plans, and in many cases have made real progress.”

That is from the regulator responsible for putting the trust into special measures for now.

Maternity Safety Strategy

John Howell Excerpts

Tuesday 28th November 2017 Commons Chamber

[Mr Hunt]

I am very happy to do that. Midwife-led units and home birthing are both part of the NHS maternity offer, but it is wrong to suggest that there is a conflict between patient safety and the choice made by mothers. No mother would ever actively make a choice to do something that was not the safest option for her and her child.

[John Howell (Henley) (Con)]

I welcome the statement, and I am glad that the Secretary of State mentioned the role of tobacco. Has he also considered the role of alcohol?

[Mr Hunt]

My hon. Friend is absolutely right to say that. The evidence is very clear about the damage done to foetuses and babies if there is too much—or, indeed, any—drinking by a mother. I did not mention it in the statement because we are focusing on smoking cessation training, but he is right to mention the issue.

Drug Addiction

John Howell Excerpts

Wednesday 22nd November 2017 Westminster Hall

[Craig Mackinlay]

The hon. Gentleman is right. I have an expansive speech to make, which I think will cover all the issues well. Perhaps he would like to come back in with those points later.

I chair the all-party parliamentary group on the harmful effects of cannabis on developing brains and have a long interest in that topic. The APPG’s principal aim is to raise awareness of the continued and growing danger to children, teenagers and their families of cannabis use in particular but also of wider drug use. I will publish a detailed paper on that subject later. The effects of the early use of skunk cannabis on youngsters’ mental health are increasingly recognised, as is the additional human cost of the significant rise in other effects, such as traffic-related deaths, in some of the US states that have gone down the route of decriminalisation.

I do not just take an abstract, desk-based approach to this topic. I have been a magistrate in Kent for 12 years. For too long, I have seen people go through the same revolving door of committing crimes, coming to court and going to prison. The same drug-related issues come up time and again. On one occasion, someone’s appearance in court arose from offences committed on the day of their release from a custodial sentence. That revolving door has to stop. Too often, I have seen youngsters in their late teens or early 20s who are on employment and support allowance or similar disability benefits and are incapable of holding down work brought to court after bouts of acquisitive crime. Nearly all of them are on long-term anti-psychotic drugs to deal with schizophrenia and bipolar disorders. In my experience, practically every one of those people gives the same mitigation in court: “I’ve had a long-term addiction to cannabis from an early age”—often from the age of 13.

The 2014 NHS National Treatment Agency for Substance Misuse paper was particularly useful in advance of this debate. It highlights that there are 306,000 heroin and crack users in England, with disproportionate heroin and crack use in lower-income areas compared with wealthier parts of the country. Drug use and poverty are linked. More than 1 million people are affected by family members’ or friends’ links to drug addiction. The Advisory Council on the Misuse of Drugs found a substantial increase in the number of people dying from drugs in the UK in recent years. That is mainly down to opioid substances, which, as I mentioned, caused 2,677 deaths in 2015. Opioid-related deaths have increased year on year. A massive increase in the 1990s followed a marked increase in heroin use. Thankfully, the number of deaths flattened and declined in the late 1990s and early 2000s—that was often put down to lower grade and more highly cut heroin being sold—but it has risen markedly since 2004.

Let me move on to fentanyl and various synthetic opioids, which are cited as the reason for the increase in deaths in the US. Fentanyl is a fairly normal pharmaceutical product. It is widely used, often in operations. It was first created in the early 1960s as a pain management drug, and it is very effective at that. It has a fairly easy formulation, but illicit supply increasingly comes from China, hence its street name of China white.

The epidemic of drug overdoses in America is killing people at almost double the rate of both firearm and motor vehicle-related deaths. Between 1999 and 2015, it is estimated that fentanyl and derivatives killed about 300,000 people in the US—the numbers are of virtually biblical proportions.

We regularly hear the argument for legalisation of cannabis, with those demands often coming from our Liberal Democrat friends—I see the right hon. Member for North Norfolk (Norman Lamb) in his place. Let us examine a real case study. In November 2012, Colorado and Washington states voted to legalise the private use of marijuana. In those two states, marijuana use exceeds the US national average and has risen significantly post-legalisation—more rapidly than in states where it is still illegal. We have also seen increases in teen arrests, accidental ingestion by children, marijuana-related poisoning, teenage admissions to treatment, and crime.

According to the Associated Press:

“In Washington, the black market has exploded since voters legalized marijuana…with scores of legally dubious…dispensaries opening and some pot delivery services brazenly advertising that they sell outside the legal system.”

Rather than putting a lid on matters, legalisation has taken the lid off. Marijuana-related traffic deaths—where a driver tested positive—have more than doubled, from 55 in 2012 to 123 in 2016, and there has been a 72% increase in marijuana-related hospitalisations since legalisation.

With that backdrop, let us look at the UK. The Library suggests that drug misuse in England and Wales has fallen in the past decade. That has got to be good news. However, I view some of those figures with a little scepticism; I will refer to such matters later on. Of course, 95% of heroin on the streets originates from Afghanistan, and cocaine invariably comes from Peru, Colombia and Bolivia; it is not manufactured in the UK. For that reason, I very much hope that as we leave the European Union and exercise more diligent control of our borders, we will be able to implement a more rigorous approach to border security, particularly on the smuggling of drugs.

The number of people in drug addiction treatment in the UK is at just a little under 300,000, with opiate dependency involved in more than 52% of cases. More than 100,000 under-18s are living with people in drug treatment. Those are some of the human costs. What are the financial costs?

[John Howell (Henley) (Con)]

I thank my hon. Friend for introducing the debate. Before he moves on to financial costs, will he say something about another side of the human cost—the extent to which prisoners are taking drugs and the efforts being made to try to stop that in prisons?

[Craig Mackinlay]

My hon. Friend makes a good point. We in the judiciary often feel that we put people in prison as a last resort and hope that that is a place where they may seek relief from drugs and get the treatment they need. However, all too often we hear of many examples where that is far from the case.

I want to mention the financial cost, because it is hugely relevant to our economy. Figures I have put together suggest that the financial cost now amounts to a fairly reasonable chunk of our annual deficit. It is very difficult to pull figures together, but one that I have derived from headline data is £20.3 billion a year. That does not include some of the more unknown and abstract costs, such as opportunity costs of lost economic output from a potential workforce who are economically inactive due to drug dependency and the physical and mental effects of drug use.

To break the figure down, drug-related crime is estimated at a fraction under £14 billion a year. The cost to the NHS of ongoing health issues resulting from drug addiction is half a billion. The benefits and treatment cost is estimated at £3.6 billion—£1.7 billion in direct benefits, £1.2 billion in the cost of looked-after children of drug addicts, and £700 million in addiction treatments such as methadone and Subutex. The cost to the courts, the Prison Service and the police in 2014-15 was £1.6 billion. An addicted person not in treatment and committing crime costs on average £26,074 a year. A somewhat dated Daily Telegraph report shows that a problem drug user could cost the state £843,000 over their lifetime—and that was in 2008.

Some of the other human costs are obvious, such as depression, anxiety, psychosis and personality disorders. Some 70% of those in drug treatment suffer from mental health problems. We might ask which follows which, but I think there is a clear link between drug use and psychotic episodes. Cardiovascular disease is also an issue after a lifetime of drug misuse. Muscular and skeletal damage are commonplace among injecting drug users. Lung damage following the smoking of various drugs and derivatives is also prevalent. Poor vein health and deep vein thrombosis is common among injectors. Then there is liver damage, which is expensive to treat, with hepatitis C causing cirrhosis, liver failure, liver cancer and death.

Deaths can come in many forms, including through accidents, suicides, assaults and simple overdose, as well as misadventure from drug poisoning, and drug abuse and drug dependence. Figures from the Office for National Statistics show that 2016 saw the highest number of deaths down to illegal drug use since records began in 1993. That fact is worth bringing to the table. Fewer than 1% of all adults in the UK are using heroin, but about 1% of heroin addicts die each year—10 times the equivalent death rate of the general population—and those deaths are predominantly from heroin and opioid use.

I will give the hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts) some figures for the UK. Between 2012 and 2015, opioid-related deaths in England rose by 58%. She will be pleased to know that in Wales the rise was only—if that is the right word—23%; in Scotland it was 21% and in Northern Ireland, 47%. We now see an ageing cohort of drug users who began their drug-taking lives in the ’80s and ’90s coming through the system with increasingly complex health and social care needs, which have contributed to a recent spike in deaths.

A typical heroin user is likely to spend £1,400 a month on drugs—two and a half times an average mortgage. More than half of all acquisitive crimes—crimes including shoplifting, burglary, robbery, car crime, fraud and drug dealing, whether at a lower or higher level—are down to those on heroin, cocaine or crack. Those crimes have victims. To bring that down to a micro-level, figures from Kent County Council’s road safety team show there were 59 incidents of known drug-driving on Kent roads in 2016, with 16 resulting in serious injury and three in road accident deaths. Those figures are rising. In the last 10 years, Kent has seen 18 fatal, 70 serious and 142 slight accidents due to drug-driving incidents.

When budgets are stretched nationally and locally, the temptation is to reduce treatment, but that is entirely the wrong approach. NHS figures suggest that for every £1 spent on drug treatment, there is a saving of £2.50 to general society. We have a good record on drug treatment in the UK, far better than many other countries in the world. In England, 60% of heroin users are in treatment, compared with only 45% in Italy and 37% in the Netherlands. We have fewer injectors now than we did some years ago. We have an advanced needle-sharing procedure, and that is improving. As I say, it is far better than other countries: 1.3% of drug injectors suffer from HIV, compared with 3% in Germany and 37% in Russia, so we are doing some things very well.

What can drug treatment do to help outcomes for society? Obviously, it stops emergency admissions, as A&E is often the first call, it prevents suicide, self-harm and accidents, and of course it reduces reoffending. Estimates in the NHS document suggest that a city the size of Bristol could cut 95,000 offences a year through effective treatment. The benefit of that to society is some £18 million a year. It is not just the financial effect, however; there are other societal effects: reduced crime, less drug litter and less street prostitution. The area that I used to represent as a councillor in the Medway towns was plagued by street prostitution in the middle of Chatham. With that came the drug litter and sexual paraphernalia literally dumped in the street, costing the council money and being a potential source of infection to others.

Troubled families can be stabilised through effective drug treatment. We can reduce drug-related deaths and blood-borne viruses. I repeat: £1 spent can represent a saving of £2.50 to society.

--- Later in debate ---

[John Howell (Henley) (Con)]

Thank you, Mr Gapes, for managing to squeeze me into the debate. I shall use the time wisely, I hope. We have all agreed that drug misuse can destroy lives, that it has a devastating effect on families and communities, and that we can help individuals by preventing drug misuse and through treatment and wider recovery support. That is where I would support the Government’s new strategy—in putting recovery at its heart.

What I am uncomfortable with at the moment is the idea of going straight to a policy of decriminalisation. I should like smarter law enforcement. How to approach that is largely in the hands of police and crime commissioners. If we had a smarter enforcement response, it might produce beneficial results. There is no reason why the enforcement process against those who supply drugs should not be harsh, involving effective action. However, we need to be much more sophisticated in our approach to possession, and in taking account of the number of people using drugs, and who are therefore committing crimes. If it is possible to take a halfway position on the issue, I certainly advocate that.

We need also to ensure better outcomes, and better measurements to capture them, throughout the process. We have bandied figures around today, but there is not a lot of commonality between them, and the figures that I have are slightly different from those that my hon. Friend the Member for South Thanet (Craig Mackinlay) set forth. We need some really tight figures; and I am surprised, given the amount of time that has been spent in combating the drugs problem, to find that we still do not have those figures.

In an intervention on my hon. Friend the Member for South Thanet I mentioned the Prison Service, because I am a member of the Select Committee on Justice and have visited many prisons where the issue has come up. Sophistication is needed in the way we tackle that. There are people in prison who were taking drugs before they went there, and quite a lot who have taken drugs since they came into prison. How we handle that will say a lot about how we tackle the problem for the future.

The thing that has most impressed me is information I was sent by a charity called Release. I know that it argues for ending the criminalisation of drug possession; but it brought out some key points on which we need to concentrate. The first was the necessity to combat the situation by improving public health. We should spend some time on that. It also stresses ways that we can reduce the stigmatisation and marginalisation of vulnerable populations—a number of Members have spoken about that—and allied to that is the need to combat the spread of infectious diseases. Finally, it is also necessary to look at a range of other issues, such as addressing homelessness. Those things are in the Government strategy, but I do not yet see them being joined up in order to take them forward.

[Several hon. Members rose—]

Safeguarding Adults with Learning Disabilities

John Howell Excerpts

Tuesday 17th October 2017 Westminster Hall

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

I beg to move,

That this House has considered supporting and safeguarding adults with learning disabilities.

It is a pleasure to serve under your chairmanship, Mr Wilson, as we consider this hugely important issue. How we better support and safeguard adults with learning disabilities is a subject on which I have been seeking to secure a debate for some time, following the most appalling case involving a young man with learning disabilities from my constituency and his violent death back in June 2015.

The circumstances leading up to Lee Irving’s killing have been the subject of a safeguarding adults review which was published in June 2017, following the trial and sentencing of those responsible which finally concluded in December 2016. I will return to Lee’s case and the outcome of the review in more depth, but first I will briefly provide some context to the debate.

About 1.4 million to 1.5 million people with a learning disability are estimated to live in the UK, of whom some 350,000 have a severe learning disability. The charity Mencap, which describes itself as the leading voice of learning disability, replies to the question, “What is a learning disability?” by explaining:

“The answer is that it’s different for every person who has one. But there are some things that are true for everyone with a learning disability, and some common (and not so common) conditions that will mean you have a learning disability.”

Mencap goes on to state:

“A learning disability is a reduced intellectual ability and difficulty with everyday activities—for example household tasks, socialising or managing money—which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.

The level of support someone needs depends on the individual.”

Importantly, Mencap concludes:

“It’s important to remember that with the right support, most people with a learning disability in the UK can lead independent lives.”

I saw that for myself in Dinnington in my constituency when I visited the home of the then 18-year-old Joe to hear about how he was being supported by the national charity United Response during the transition from childhood to adulthood. That involved providing Joe with tailored assistance in a supported housing setting to help master tasks such as managing money, basic cooking skills, cleaning the house, keeping up with the laundry, managing his coursework on his construction course at the local mainstream college, and being able to use public transport safely.

One of the concerns that Joe raised with me during that visit was his disappointment that he had been prevented from securing an apprenticeship because he was unable to achieve the required grade C in maths and English at GCSE. I am pleased, as one of the co-chairs of the all-party parliamentary group on apprenticeships, that that requirement has recently been lifted for people with learning disabilities, following a review conducted by the hon. Member for Blackpool North and Cleveleys (Paul Maynard).

I am regularly lobbied by constituents with learning disabilities who, with the support and encouragement of the Newcastle-based charity Better Days, are able to send me easy-read letters about issues of concern, such as the lessons to be learned from the independent review of deaths of people with a learning disability conducted following the tragic death of Connor Sparrowhawk, or the Government’s decision no longer to provide funding to the National Forum of People with Learning Disabilities, which meant it closed in March 2017, having been operational since 2001.

There is a variety of good support out there, but we all know that many people with learning disabilities, and their families and carers, will face a series of enormous challenges, barriers and indeed discrimination throughout their lives, all of which inevitably puts a great deal of strain on family relationships. What do those barriers involve for people with learning disabilities?

Mencap highlights that children with special educational needs are twice as likely as other children to be bullied regularly; 40% of disabled children live in poverty; and 75% of GPs have received no training to help them treat people with a learning disability. The House of Commons Library has noted the evidence that people with a learning disability experience inequalities in healthcare and the fact that, on average, men with a learning disability die 13 years sooner and women with a learning disability 20 years sooner than those without learning disabilities.

Learning Disability Today has reported on a survey that found that almost two thirds of parents of children with learning disabilities said that they missed social engagements in the past year due to the fear of how other people would react to them; one in four young people with a learning disability had been bullied by members of the public at nightclubs or concerts; and only 30% of people would feel comfortable sitting next to someone with a mild learning disability at a show or a concert.

[John Howell (Henley) (Con)]

I hear what the hon. Lady is saying about GPs. Does she think that it would be useful if training were made available to MPs and their staff to deal with such situations?

[Catherine McKinnell]

That is an interesting suggestion. As a constituency MP, I work closely with the organisations I have mentioned so that I may correspond with and represent people with learning disabilities. There are local solutions and, potentially, national ways to support MPs. That is a good suggestion to ensure that those voices are heard in Parliament, and the intention of this debate is very much to give voice to some of the concerns. I am sure that other hon. Members are present for the very same reason.

The issues that I have outlined are just some of the frankly depressing ones faced by people with learning disabilities. Such issues were commented on by Mencap in its response to the Equality and Human Rights Commission report, “Being disabled in Britain: a journey less equal”, which was published earlier this year. In responding to the EHRC report back in April, Mencap commented:

“Rather than move forwards in the past 20 years this report shows how inadequate action and a constant stream of cuts have condemned disabled people to a life of poverty and inequality.

With the employment rate for people with a learning disability currently standing at less than 6% and with cuts to Employment Support Allowance coming into effect this week, it’s not hard to see why so many disabled people are struggling to find money for things as basic as food. People with a learning disability also face inadequate housing, poor access to health care and a society that misunderstands them.”

One challenge facing people with learning disabilities and their families is of course being able to access the right social care support at a time when adult social care budgets are at breaking point after years of punitive cuts to local authority funding since 2010, combined with rising cost pressures. The Local Government Association outlines that some 127,725 adults in England under the age of 65 were receiving long-term social care from their local council for a learning disability in 2015-16, meaning that about one third of councils’ annual social care spending, or approximately £5 billion, is used to support adults with learning disabilities.

The LGA also highlights, however, that the number of adults with a learning disability needing social care is set to rise by 3% a year, piling further pressure on local authority finances. Overall, councils face a £2.3 billion shortage in funding by 2020. I therefore strongly urge the Chancellor to address this issue next month as part of his autumn Budget, as well as the ongoing and serious concerns about the potential historic and future costs associated with sleep-ins, following the change in Government guidance on them, which have significant implications for the future provision of support to adults with learning disabilities.

As I said, there is a particular reason that I secured this debate, which I have been trying to do so for several months. Undoubtedly, all Members of Parliament frequently have to handle very distressing issues, and I have dealt with a lot.

--- Later in debate ---

[John Howell (Henley) (Con)]

I will not make a long intervention, but I put on the record my thanks to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) for raising that case, which was clearly a distressing one, as the emotions she has shown illustrate. What she said about the safeguarding rules is absolutely crucial, and all our county councils could take note of those and ensure that they follow them clearly. My concern is always about the gap that might exist between the safeguarding rules that apply to children and those that apply to young adults. The gap that can emerge there causes many problems, so the more we can do about it, the better.

I make a suggestion to the hon. Lady. She has raised a lot of concerns about the law, and I wonder whether, if she could gather together enough evidence to make a presentation to the Select Committee on Justice, it might be willing to take up an inquiry into a review of this area, which would provide further support for her efforts to change the law. I cannot speak for the Justice Committee, even though I am a member of it, but I think it is worth her trying to gather as much information as possible to take that forward.

I completely agree with the hon. Lady that we need to look after people with learning disabilities. In my constituency we try to do that in a number of ways outside the country council system. First, the Ways & Means Trust’s operation in my constituency tries to provide in-work experience for young people with learning disabilities by providing them with garden centre experience. They are trained in how to look after flowers, how to bag pots—if hon. Members see what I mean—and eventually how to sell them. At Christmas time in particular, it is a useful place to go to get wreaths and things like that, made by people with learning disabilities. That is a good way of showing that we care and of providing them with enormous opportunities to fulfil their lives by holding jobs that are meaningful and keep them in work.

Secondly, an event called the Regatta for the Disabled occurs in my constituency every autumn. I have been involved since its commencement some seven years ago, usually in opening and compering it. The regatta provides an opportunity for people with physical and learning disabilities to enjoy the river. It provides boat trips for them and allows them to share with others their enjoyment of life and what they can do. One would need to be there to see their physical enjoyment of life; it is absolutely catching. I point that out as a way in which my own constituency tries to look after people with learning disabilities.

Finally, every year, with the help of Mencap, we bring together all those people with learning disabilities who are able to come in the town square in Henley, and we sing to the population who come along and do their shopping, stop and have a cup of coffee and listen to the singing. The quality of the singing and the enthusiasm with which people with learning disabilities take it up are amazing. I am convinced that, by putting the effort into ensuring that we understand and care for people with learning disabilities, we can achieve a vast amount.

Healthcare in Oxfordshire

John Howell Excerpts

Tuesday 17th October 2017 Westminster Hall

[John Howell (Henley) (Con)]

Thank you, Sir Roger. I do apologise that I have to go to meet the Minister of Agriculture from Nigeria. He is here at my own invitation, so I can hardly be absent from the meeting.

Let me say straightaway that I chair a group of Oxfordshire MPs who meet approximately every six weeks to discuss their relationship with the CCG. The meetings were started in order to discuss delayed discharges of care, and I have to say, from the last meeting that we had, they are going very well. Oxfordshire had the difficulty that it was one of the worst performers in delayed discharges, but is now coming back to being one of the best. I have been outside the STP process because my area was handled separately in advance. Townlands Hospital in Henley needed a multi-million pound investment before the STP process started, but I agree with my hon. Friend the Member for Witney (Robert Courts) that the process of consultation that was started by the CCG left a lot to be desired. As a former professional in the area of consultation, I looked with some disdain at what was taking place, but I appreciate that the CCG had a particular difficulty in seeing the hospital as Henley’s or south Oxfordshire’s, which they deliberately intended it to become. In the villages outside Henley that make up the largest proportion of people in south Oxfordshire, there was enormous support for the proposals. It was only in Henley that people took the opportunity to complain about the lack of beds.

Let me turn to the lack of beds. My hon. Friend the Member for Witney spoke about treating people in hospitals close to them. I fully agree with that, but a better model would be to treat them in their own homes. That healthcare system is called ambulatory care. I have spoken about that in this Chamber at length, so I will not repeat all of what I have said before. Ambulatory care requires a full integration of social care activities and medical activities in an area, because it turns the hospital into an extremely efficient medical campus-type facility, with very few people needing to stay in overnight.

In fact, if people stay in overnight, the effects on them are quite horrendous. Anyone over the age of 60 who stays in for four or five days is immediately incontinent. Without wishing to comment on people’s ages, some of us in the Chamber would look at that with great horror. If people stay in for a lot longer than that, other bad effects come from that.

When the consultation took place, there was a tremendous amount of antagonism about the beds being put—

[The Minister of State, Department of Health (Mr Philip Dunne)]

Will my hon. Friend give way?

[John Howell]

Of course.

[Mr Dunne]

I am sure that my hon. Friend, who is making a powerful, constructive contribution to the debate, would not want to give colleagues the impression that of necessity, someone over the age of 60 would become incontinent if they spent four nights in a hospital. I think he is trying to suggest that there is a greater risk of adverse effects the longer one stays in hospital.

[John Howell]

I thank the Minister for that point; I was not suggesting that it was an inevitability. However, at this stage let me extend an invitation to him to visit the hospital so he can see how it works and how it has integrated social care with the medical activities there. It is based around a RACU—a rapid access care unit—which is similar to the EMU—emergency multidisciplinary unit—in Abingdon that is being proposed elsewhere. As I said, it turns the hospital into a diagnostics hospital, similar to a hospital developed in Welwyn Garden City that I went to see.

I saw the difficulty for the CCG with regard to its consultation when I went to a SELF—a South East Locality Forum—meeting. People from Henley were sitting around the table with big beaming smiles on their faces saying how wonderful the hospital was, and a member of the CCG had to stop them and say, “Well, it is a pity you didn’t say that when we were developing the hospital. Right to the end of the consultation you were attacking us on this and on taking the beds out and putting them in a care home at the side of the hospital. That is working very well and now you say that it is absolutely wonderful.” The fact is that, apart from some minor snags with the new hospital, it is a fantastic new investment by the Department of Health. It shows the way a community hospital should be developed not just in Oxfordshire but across the country. I repeat my invitation to the Minister to come and visit.

The great thing about the hospital was not the consultation initiated by the CCG but the support that I got from the Royal College of Physicians, which came out very strongly in favour of an ambulatory healthcare model and very favourably in support of the hospital. That is an interesting point, which goes back to my comments in support of my hon. Friend the Member for Witney about the lack of consultation experience on the part of the CCG. That organisation is willing to learn, and I hope that it will. I also hope that we, as MPs who meet it from time to time, will be able to keep up our pressure on it to deliver the sort of services that we feel our constituents want.

[Nadhim Zahawi]

On the point about learning, the Oxfordshire clinical commissioning group has only one district council from Warwickshire—Stratford-on-Avon District Council—on its board. In phase 1 of the consultation, which began in January, it only met the council in March; the council’s overview and scrutiny committee had requested a much earlier meeting. Should that not be part of the learning process?

[John Howell]

I fully agree that it should be. As I said, I am not here to defend how the CCG does its consultation. If I had the chance, I would make many changes to the consultation, and including others on the list of people who will be consulted as part of the decision-making process would be an important part of that.

I think I have probably said enough both to support my hon. Friend the Member for Witney and to make the point that it is possible to get through even a bad consultation by a CCG and get a fantastic hospital—ours is doing a brilliant job for all the constituents of south Oxfordshire, not just for one town.