NICE Appraisals: Rare Diseases Treatments

Kerry McCarthy Excerpts

Thursday 21st March 2019 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

I will be brief because I have spoken on this topic many times, specifically about cystic fibrosis, but before I get on to that I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on her speech about PKU. I popped into the PKU drop-in event a few months ago purely by accident when I was doing one of those classic MP things where we are asked to go here, there and everywhere to be photographed holding up a sign or wearing a silly hat. I knew nothing about PKU, but I talked to an 11-year-old boy there about his diet. I am somebody who chooses to have a fairly restrictive diet in that I do not eat meat, dairy or fish, but I look for protein alternatives, and I was struck by the sheer difficulty that the boy has in functioning and by the fact that he is unable to enjoy the normal life of an 11-year-old. My heart went out to him, and I do not need to add any more, because my hon. Friend made such an excellent speech.

We have also had excellent speeches about the difficulties of obtaining Spinraza. I do not claim to be an expert, as some other Members are, but constituents have been in touch with me with similar problems. I would therefore support any efforts to get the drug approved, because that would make a huge difference to their lives.

As I said, I am here to talk about cystic fibrosis, and I have a personal interest in that my 14-year-old niece Maisie has CF. She must be the most mentioned niece in Parliament, because she gets name-checked quite a lot. Before I talk about Maisie, I want to mention the recent evidence to the Health and Social Care Committee from Oli Rayner, who lives with cystic fibrosis. He has just turned 40 and had a lung transport around 18 months ago, so he is at the healthier end of the spectrum, and he talked about being quite lucky until he reached his thirties, when his health started to deteriorate.

However, many cystic fibrosis patients are not as lucky. My constituent Lee Partridge lost both his daughters within eight months when they were both in their late teens, and it is common for people to start to deteriorate when they reach their teens. Luckily, my niece is very much at the healthier end of the spectrum, but that does not influence my judgment; I want to make the case for Orkambi to be available not just for her when it is needed, but for everybody else with the condition.

I have been trying to get my head around quality-adjusted life years, how the calculations are made, whether NHS England is doing the right thing and whether NICE is using the right sorts of calculations compared with other countries. NICE says the calculations factor in societal benefits, but it is not clear how they do that.

The hon. Member for Reigate (Crispin Blunt), who made an excellent speech, spoke about the cost of hospital treatment to society as a whole. If a person has to go into hospital several times a year, there is the cost of care, but there is also the cost of lost work time, the cost of care by family members and even the cost of transportation to hospital if they live in a rural area. There are so many factors. Although NICE says it takes those things into account, I cannot quite see them. Was it Hugh Dalton or Clement Attlee who was called a “desiccated calculating machine”? Anyway, the system seems to be based on desiccated calculations.

It may be incredibly naive of me, but why cannot the system just think of the impact on people’s lives and of the hell they are going through? It is incredibly difficult for teenagers to come to terms with discovering that they have a life-limiting condition, and there is also the issue of the availability of mental health support and counselling.

It is striking that everyone who gave evidence to the Health and Social Care Committee said that the drugs work. There is no question but that this would be of benefit to people. Kalydeco, the first drug, helped only 5% of patients, and it was funded in part because not many people would benefit and, therefore, the costs were lower. We now have Orkambi, and there will soon be a successor that will benefit about 40% of patients. For the future we are looking at triple therapies that will cover about 90% of the cystic fibrosis community. If 90% of people can benefit, of course the overall cost will go up, but the decision should not be made on the basis that we fund one thing because not many people will benefit.

I am concerned that Vertex and other companies would be deterred from exploring further therapies and treatments if they cannot get a commercial deal. The line that jumps out of the Health and Social Care Committee’s letter to Vertex, which it wrote shortly after the meeting, is:

“Vertex appears to have decided on the pricing of its therapies on the basis of the return it wants to make, rather than the value which they bring. NHS England is right to continue to take the wider patient population for whom it is responsible into account.”

The Minister has previously responded to such debates, so can we have an update on where the conversations have got with Vertex, including the Secretary of State’s meeting? There are so many cystic fibrosis patients waiting to hear the outcome. Last time I looked, the petition was up to about 80,000 signatures. Can we try to get some answers soon?

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[Ian Austin (Dudley North) (Ind)]

I thank the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), and the Backbench Business Committee, for arranging this debate. I am here to speak up for people in Dudley with cystic fibrosis, phenylketonuria—or PKU—and spinal muscular atrophy.

I have been campaigning with others to make Orkambi and other new treatments available for people with cystic fibrosis because I was contacted by Carly Jeavons from Dudley, who took part in the clinical trial for Orkambi, and by Samantha Carrier, whose baby daughter Daisy was diagnosed shortly after birth. Samantha has given up her career and now devotes her life to campaigning for access for these life-changing drugs. While listening to this debate, I have been receiving emails, texts and other messages from people around the country—heroic parents of children with cystic fibrosis who work so hard and campaign tirelessly for the treatments that their children need. I know that the Minister has met some of these parents, and I hope he will have some new answers for them today, because they have worked so hard to raise these issues, which really do need to be sorted out.

Before the clinical trial, Carly Jeavons had to take 90 tablets and do two hours of physiotherapy a day. She had a lung function of around 44% and spent two weeks in hospital every three months. She had to choose between the financial hardship of leaving work or her health being made worse as she struggled on at work. She told me:

“Orkambi has changed my life. My health has remained stable. I only need one or two courses of IV’s per year instead of the four previously, hospital visits have been massively reduced and admissions are non-existent.”

Since having Orkambi, she has been able to go on holiday abroad for the first time with her family, and she has got married. She has also started a business and is employing people, so she is making a much bigger contribution to the economy. The Government need to look at the contribution that people who get these drugs can make to the economy, not just at the costs of providing the drugs. I believe that NHS England and NICE are with Vertex this afternoon for yet another meeting about whether these cystic fibrosis drugs can be provided. But this comes three years after NICE appraised Orkambi. I really hope that the Minister will explain how this situation can be resolved and how other situations like it can be avoided, so that patients can get can get access to these drugs.

Let me turn to the issue of treatments for people with PKU. Some of the people who have been leading this campaign are sitting in the Public Gallery, watching this debate. Again, I hope that the Minister will have some good news for them today. As we have heard, PKU is a rare metabolic disease that leaves people unable to metabolise protein properly, leading to a toxic build-up of material that can cause irreversible brain damage. The only existing treatment is a strict diet of extremely low protein, meaning that almost all normal foods are off limits. The diet is lifelong, and sufferers find it stressful and difficult to cope with. I had never heard about this condition until a woman in Dudley called Kirsty Thornton got in touch with me. Since then, I have met the campaigners and taken part in a PKU diet challenge. I have also joined the cross-party parliamentary campaign led by the hon. Member for Blaydon to ensure that people with PKU get access to the treatments and supplements they need.

It is heartbreaking for parents of young kids with PKU who do not understand why they cannot go to their friends’ birthday parties in case they eat the wrong foods that will make them tired, sick and ill for the rest of the day, or for longer. Students say how difficult it is when their friends are going on nights out, or they move to university and the people they share a flat with are ordering in pizzas and so on, or they cannot go out on a date because they do not know what they are going to be able to eat or not eat. This must be really tough for young people.

[Kerry McCarthy]

My hon. Friend will probably be aware that the Government are looking at a new food strategy, and one of the things under consideration is better food labelling. A lot of people think that those who make certain dietary choices do it almost to be trendy, or just because it is the fashionable thing to do, but there are people whose lives are at stake if they cannot get the information on food that they need. Food manufacturers and anyone else involved in the provision of food need to be alert to the fact that it is important that people know what they are going to be eating.

[Ian Austin]

That is a really important point. The PKU campaigners have explained to me that on some occasions when manufacturers have changed the ingredients in food or drinks, that has had a terrible impact because people with PKU have not necessarily known about it, so they have continued to drink or eat things that they have consumed without any problems in the past, but because the ingredients have changed, it has caused them a big problem.

For many people with PKU, taking Kuvan considerably increases the amount of protein that they can safely eat. We are therefore urging the Government, the NHS and BioMarin, which manufactures these supplements, to agree a deal so that people with PKU can enjoy a normal healthy life. I spoke to the National Society for Phenylketonuria this morning, and it told me that the whole PKU community are demoralised. They say that they are working hard but feel that not much progress is being made. What is the Minister going to do today to give these people, some of whom are in the Public Gallery, and others who are sitting at home with their kids watching this debate, to give them hope of this situation being resolved?

My next point is about Spinraza treatment for people with spinal muscular atrophy, or SMA, which affects an estimated 1,300 people across the UK. It can cause irreversible loss of a child’s ability to crawl, walk, breathe and swallow. In the most severe cases, it can cause death. Spinraza is the first possible treatment for those who have SMA types 1, 2 and 3. It can slow its progression and prolong life. From April, this treatment is going to be routinely available in Scotland, and it is already available in 24 other countries in Europe, yet it is still stuck in the NICE process for England, Wales and Northern Ireland.

That is why, in the end, the purpose of this debate is to ask the Government to look carefully at the way that NICE works. New drugs are being developed, and technological changes are happening, so rapidly that the Minister needs to be able to tell us how the way drugs are assessed and licensed, and then approved, will work in future. How is he going to ensure that these ground-breaking drugs are made available to the people who need them, when they need them? In 2016, NICE was not able to recommend the use of Orkambi because of uncertainty around its long-term value, impact and cost-effectiveness. But this drug is available in the USA, across Europe, and, more recently, in Scotland, so when do the Government think patients in England are going to get it? This is really urgent. The system has not worked and patients are being let down.

On PKU, NICE decided to start an appraisal of Kuvan in 2018, but this has since been suspended. NICE is currently reconsidering which appraisal process to use to access Kuvan, and the NHS is considering whether to fund an interim policy for the use of the drug. But, again, this is not enough, and not quick enough. The NICE process sees PKU as rare, but not rare enough. As we have heard, the majority of PKU treatments are assessed by the STA process, which is designed for non-rare treatments. NICE’s approach evaluates the lifelong costs of treatment, meaning that the cost thresholds and the approach to evidence are all designed for more common diseases than PKU. SMA sufferers are waiting for NICE, NHS England and Biogen, which manufactures Spinraza, to come to a deal. I hope we will hear better news on all those things from the Government than we have in the past.

It is my job to listen to people in Dudley who are living with cystic fibrosis, PKU, SMA and other rare diseases, to come down to London and speak up for them in Parliament and to demand, as we are doing this afternoon, that the Government ensure that they get access to the treatment they need and deserve.

Orkambi

Kerry McCarthy Excerpts

Monday 4th February 2019 Commons Chamber

[Kerry McCarthy (Bristol East) (Lab)]

As some of my colleagues will know, I have a 14-year-old niece with cystic fibrosis, as well as many constituents who have it. I obviously know people within the community, too. Is the hon. Gentleman aware that in 2017 Vertex earned £2.5 billion from the sale of Orkambi and the chief exec was paid more than $17 million? I think that the Department of Health and Social Care probably has to go some way towards meeting Vertex on this, but it seems to me that there is an awful lot of money sloshing around and both sides are in a position where they could compromise.

[Bill Wiggin]

First, let me say how sorry I am to hear about the hon. Lady’s niece. We should take this very seriously. The figures that I have are even worse than the ones that she has laid out.

The price remains inaccessibly high, and this is entirely due to the powerful patent laws that allow pharmaceutical companies to monopolise drug production. Vertex expects to retain monopoly intellectual property protection on its cystic fibrosis drugs well into the 2030s. Analysts conservatively estimate that it will generate profits of $13 billion on Orkambi and another related drug, Kalydeco, alone. This could be used to fund further research and development—to reward its shareholders for its brilliant breakthrough and perhaps to encourage it to do more. But no, Vertex has spent $500 million on buying back its own shares. Well, that should certainly boost executive remuneration.

I am aware that provisions exist under the Patents Act 1977 for the Government to take independent action against Vertex. Crown use licensing is a powerful legal tool that can be used to safeguard public health. It can ensure the availability of fairly priced medicines in a competitive pharmaceutical market. Section 55(1) of the Act states that the Government can be granted non-authorised use of patents

“for the services of the Crown”.

That can be granted at all stages of manufacture, use, importation, sale and retention of a product. This is a legal opportunity to break the lethal deadlock that eats away at the youngest sufferers who stand to gain the most from this medicine. Crown use licensing has been used by the UK Government before, to great effect. They can suspend a patent and thereby force down the high price of particular pharmaceutical or medical equipment. For example, in 1991 the Government authorised the supply of machines known as lithotriptors for treating kidney stones. More recently, breast cancer patients have lobbied the Scottish Government to implement a Crown use licence on the drug Pertuzumab. Crown use licensing could similarly be used to overturn the patent monopoly on Orkambi by Vertex.

Oral Answers to Questions

Kerry McCarthy Excerpts

Tuesday 27th November 2018 Commons Chamber

[Matt Hancock]

I can recommend to anybody spending the night with my hon. Friend in Derriford Hospital, where we learnt a huge amount. The team there were absolutely amazing and it was a brilliant experience. I also learnt a lot about the capital bid, which I have been keeping my eye on very closely. My hon. Friend should hear shortly.

[Kerry McCarthy (Bristol East) (Lab)]

T2. My niece Maisie turned 14 last week, and she has cystic fibrosis. It is not enough for the Secretary of State to say that letters are being sent back and forth between the drugs company and NICE. Will he get the relevant parties in a room, with him chairing the meeting, so that teenagers such as Maisie can have the drugs that will certainly change their lives, if not save them?

[Matt Hancock]

I have a huge amount of sympathy for the hon. Lady’s point. We did act to ensure that the parties came together. The offer has been made and the response from the company has frankly not been good enough. It needs to come to the table; the ball is in its court.

Autism and Learning Disability Training: Healthcare Professionals

Kerry McCarthy Excerpts

Monday 22nd October 2018 Westminster Hall

[Daniel Zeichner]

I am grateful to the hon. Lady for making that point. We could probably find favour across the House and across the country for moving on from some issues at the moment, but she is absolutely right—such issues are very pressing and probably of huge importance to most people, especially when failure to address them leads to the kind of tragedy we have heard about.

[Kerry McCarthy (Bristol East) (Lab)]

As a Bristol MP, I thought it was particularly important for me to be here. Southmead Hospital is not in my constituency, but the University of the West of England nursing course provision is. I back up entirely what my hon. Friend says about the difficulty of getting qualified nursing staff. If staff are to have all the extra responsibilities and training that have been suggested, we must ensure that the sector is properly resourced and that properly trained people come through into the profession.

[Daniel Zeichner]

My hon. Friend makes a powerful point, which I am sure we will return to. Whatever changes there are in our relationships with other countries, the shortage of qualified nurses is a huge problem—it is something like 22% in my constituency. We are unlikely to make progress on this issue unless we have the people to do it.

It is difficult to make that point at a time of such intense financial pressure on the NHS, but I remind the House that that pressure is a choice. We are a rich country, and a change in the allocation of resources could dramatically change the state of our healthcare system. However, that stress, which stems from a lack of resources, staffing, beds and specialist care, can lead to a culture in which it is difficult to provide personalised care and have the confidence to deviate from established procedure.

Let me conclude on a slightly more optimistic note. In September, in a written statement in response to the learning disability mortality review, the Minister committed to completing a public consultation on proposals for mandatory learning disability training for all health and care staff. However, that change must be quick—we cannot afford it to end up, like so many Government initiatives, in endless consultation and no action.

In England, there is a duty in the Autism Act 2009 statutory guidance for all health and care staff to have appropriate autism training, but the implementation of that duty is poor. In response to a 2016 Public Health England survey, only 17% of localities reported having training plans for all health and care staff, while 10% reported having no plan in place. The Government must commit to mandatory autism training as well as learning disability training.

The National Autistic Society remind us:

“In August, NHS England announced that autism, alongside learning disability, will be one of its four clinical priorities in the upcoming 10-year plan to improve health services. This is a great step towards making sure that autistic people are supported by the NHS just like anyone else. Alongside tackling long diagnosis waiting times and supporting good mental health, we believe that the Long Term Plan should outline a comprehensive national training programme for all health staff.”

The learning disability mortality review, which was published in May, found that men with a learning disability die on average 22.8 years earlier than the general population, while women die 29.3 years earlier. Autistica’s research shows that autistic adults without a learning disability are nine times more likely than non-autistic adults to die from suicide—a truly shocking statistic. Mencap’s research shows that almost a quarter—23%—of healthcare professionals have never received training on learning disabilities, and almost half believe that has contributed to avoidable deaths. Beyond nurses and doctors, we need to train NHS workers such as receptionists and facilities managers on how small adjustments can hugely increase access for disabled and autistic people.

I am grateful for the opportunity to open this debate on behalf of the Petitions Committee. Paula McGowan’s powerful testimony shines a clear light on what needs to be done. The case is clear. We cannot risk any more cases like Oliver’s. This cannot afford to wait.

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[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

It is a pleasure to serve under your chairmanship, Dame Cheryl. I pay tribute to my hon. Friend the Member for Cambridge (Daniel Zeichner) for a moving and harrowing account of what happened to Oliver, and to the hon. Member for Kingswood (Chris Skidmore), the local MP, who has campaigned tirelessly on this issue.

I also pay tribute to Paula McGowan, who has shown such bravery in campaigning for her son. She and her family have felt such suffering following the death of Oliver nearly two years ago—I cannot imagine the pain of losing a child. I speak for all Members when I say that our thoughts are with her and her family.

The cross-party support for the petition shows the strength of feeling of all Members of this House, who want those with learning difficulties and disabilities to receive the best possible treatment. We all want to see NHS staff equipped to make the adjustments that so often prove the difference between life and death. I am sure the Minister agrees.

It is welcome that the Government are acting broadly in line with the recommendations of the learning disabilities mortality review. However, I felt their response fell short in one particular area. Page 19 refers to the introduction of an oversight group that allows for the input of self-advocates. That is positive, and I welcome that, but the response does not spell out how success will be measured, how targets will be checked, who will decide on service changes, nor how the implementation of changes will be assessed. More effective training programmes, such as those demanded by this e-petition, are developed and led by those with learning disabilities. The Government could have been more explicit in acknowledging that.

I want to speak about Treat Me Right: an inspirational autism and learning disability awareness training programme operating across north-west London and in my constituency. For Members and those in the audience who have not heard of it, Treat Me Right has been running for 25 years. It is delivered by Certitude, a not-for-profit social care provider. The programme was commissioned by the north-west London collaboration of clinical commissioning groups last year, following a grant from Health Education England.

Although reducing the number of avoidable deaths will require a broader strategy, Treat Me Right’s impact is beyond doubt. Having been co-founded by those with learning disabilities, it is now led by people with learning disabilities. It provides essential support for A&E staff, mental health teams and the London ambulance service.

Between June 2017 and March 2018, Treat Me Right trained 942 healthcare practitioners across north-west London in learning disability and autism awareness, and it will train an additional 800 NHS autism champions by the end of this year. The statistics do not tell the full story of the programme’s success, but they do go some way to explain why I and other MPs nominated it for the care and compassion award at this year’s NHS 70 awards.

There are two clear components in the petition’s demands for NHS staff to receive mandatory training: first, the need to pinpoint critical reasonable adjustments for patients with learning disabilities; and secondly, the need to alter a damaging culture that fails people with autism or learning disabilities, preventing them from receiving the treatment they need. On that, Mencap’s statistics are striking: just under two thirds of healthcare professionals—64%—said that a lack of practical resources for them and their colleagues contributes to the problem of avoidable deaths. That is shocking. Just over a quarter say that negative attitudes towards those with autism might also be a contributing factor.

Programmes such as Treat Me Right are proving to be an effective remedy. Trainers explain clearly how autism or their own learning disability feels for them, so NHS staff can learn about uniquely challenging situations that may arise during the course of their work. In addition to training, the programme offers two tailored health toolkits for people with autism—health action plans and health passports—which are essential for signposting the critical adjustments necessary on their arrival at A&E and other departments.

The Government’s response to the review talks of ensuring

“vigilant and proactive support for people with a learning disability.”

How better to achieve that than through mandatory training, and who better to lead that training than those who know the specifics of living with autism or a learning disability?

I welcomed John, a co-founder of Treat Me Right, to Parliament earlier in the year. He felt strongly that the training programme allowed him to share his experience of living with Down’s syndrome with NHS professionals, to tangible effect. His experience is reflected in the comments of healthcare professionals across Hampstead and Kilburn who have benefited from training by Treat Me Right. The team at Brent psychological services said that the training, especially on autism spectrum disorders, was like

“receiving a pair of glasses after not knowing you needed them”.

Such testimonies, and the fact that approximately 3,300 adults are registered with Brent CCG as having been diagnosed with a learning disability, mean that the work of Treat Me Right could eventually offer vital healthcare support to thousands of my constituents who have been suffering for years.

[Kerry McCarthy]

It sounds like a fantastic organisation. I wonder whether those lessons could also be rolled out to other public services. I have been talking to Avon and Somerset police, where there have been issues about tasering people who clearly should have been treated differently. Does my hon. Friend agree, particularly as the criminal justice system and the police often come into contact with people with autism and do not know how to treat them?

[Tulip Siddiq]

I absolutely agree with my hon. Friend that the issue is not confined to the healthcare services. It crosses borders, and she made an effective point about the police and others dealing with the challenges of autism that arise in everyday life.

ME: Treatment and Research

Kerry McCarthy Excerpts

Thursday 21st June 2018 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

Thank you, Mr Rosindell, for calling me to speak.

I am here to speak today partly because constituents have been in touch to ask me to do so, but also because I have a very good friend who has been affected by myalgic encephalomyelitis, or ME, since about the age of 15 and she is in her early forties now. When I say “affected by” ME, that means that she did not go on to college and she has never held a job. She is not at the worst end of the spectrum of severity, but I think I can probably best describe her condition as just almost constantly feeling rough. So, it is like either having flu or migraines, or aches and pains.

I am aware of my friend’s condition. Obviously, it is one thing to read up on the condition or to hear accounts from constituents who come to see me, and I have had constituents with ME and fibromyalgia, which is a similar condition, come and talk to me. However, when someone has a very close friend with ME, they know that every time they try to make a social engagement with them, it will always be, “Well, Lucy will come if she’s up to it that day.” My friends and I are all planning to watch the football together on Sunday. However, we will not know until Sunday morning whether Lucy is well enough to attend, and half the time that she does come along to events, it is possible to tell that she is struggling with a migraine or flu, but she just desperately wants to see her friends. That really brings home just how debilitating a condition ME is.

As the hon. Member for Cheltenham (Alex Chalk) said, there is a cumulative effect with ME. People make such a big deal of having a cold, or just feeling a bit under the weather, or feeling hungover. Lucy feels like that most of the time and obviously there are other people with ME who are completely bedridden or who cannot bear bright lights. I had a member of staff whose younger brother came to her wedding in a wheelchair, because he had ME. So it affects people in many ways.

However, in some ways the cruellest impact of ME is the fact that sufferers are not believed and that it is a hidden illness, so to speak. The ME campaign group, Millions Missing, recently held an event in Bristol, where friends and relatives of those with ME laid out pairs of shoes to represent some of those who are suffering from the illness, which effectively renders them invisible, and they also read out stories of the battles that their friends and family members had gone through, as well as expressing their determination to see real change happen.

The organisation Action for ME used to be based in the centre of Bristol but is now based just outside. What really hits home is its raison d’être, as set out on its website, which says the organisation exists

“to take action to end the ignorance, injustice and neglect faced by people”

who have ME. Most other campaign groups for medical conditions do not have to start from there; their starting point might be to raise awareness of the symptoms of particular conditions, or to make calls for treatment. To have to start from the point of view of emphasising the injustice and neglect, because so many people deny that ME exists, just shows how much of a battle we have on our hands.

It was an excellent speech by the hon. Member for Glasgow North West. As she said, ME affects around 250,000 people in the UK. I will just cite one of my constituents, who contacted me to stress the lack of support and understanding that had been experienced when dealing with medical professionals; there are many people with ME for whom it takes a long, long time to get a diagnosis, because of that lack of support and understanding.

My constituent got in touch to share the story of her close friend’s 28-year-old son, who has had ME for last couple of years. She said that the impact on his life has been catastrophic. He was a highly skilled and highly valued journalist for a national newspaper, with a busy and vibrant professional and social life. Since contracting ME, he has been unable to work and is now living at home with his parents, who act as his carers. He has severely limited energy, he is in constant pain and he has obtained no relief or satisfaction from the treatments currently available through the NHS, his GP and the specialists to whom he has been referred. His parents have been left to research and self-fund investigations and treatment themselves, which is plainly not good enough.

In Bristol, we have a chronic fatigue syndrome/ME centre, but it has no doctors and focuses primarily on training in activity management. One of my constituents who received treatment there was highly complimentary about the staff, but she echoes the view of many other patients that occupational therapy is an inadequate approach for people with a highly disabling, multi-systemic disease.

The current National Institute for Health and Care Excellence guideline recommends treatment consisting of graded exercise therapy and cognitive behavioural therapy, but it has been criticised by all ME charities, patient organisations and representatives registered with NICE as stakeholders. We have already heard from a few people today about that.

[Michelle Donelan]

On that point, one of my constituents is a 15-year-old who finds the graded exercises very debilitating; actually, they make her condition worse, which has been echoed by ME charities and the ME community. Does the hon. Member agree that we need to look at graded exercise again in the new NICE guidelines?

[Kerry McCarthy]

Yes. So much concern has been expressed about graded exercise therapy and many patients prefer the concept of pacing, which is balancing activity and rest to help them to manage their ME and work towards recovery. However, that approach is not currently recommended by NICE. I very much hope that the Minister picks this issue up, because it is probably the most controversial issue around the treatment of ME at the moment. I welcome NICE’s decision to review its guidelines—the new guidelines are expected in October 2020, I think—and I urge NICE to listen to the voices of patients with ME.

We have heard from other speakers about biomedical research and the decades of underinvestment in that research. We have also heard that the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government. We can also consider the economic cost of not helping people at least to find a way to manage a condition such as ME; ideally, we would find the cause of ME and a cure for it. Clearly, that economic cost is unacceptable.

[Ben Lake (Ceredigion) (PC)]

The hon. Member has made a very important point about the decades of underinvestment. A friend of mine, John Peters, suffers from ME and was first struck down in the 1980s. The impact on his life has been total. He acknowledges that he would not have been able to do everything in life; he knows that there would have been ups and downs. But as he quite painfully put it to me, he has not had the chance to fail. His is a life unlived. So, given those decades of underinvestment, it is so important that we now change things for the future.

[Kerry McCarthy]

Yes. This is the problem we see over and over again with NICE: how do we value quality of life? We can look at the economic opportunities that are also lost if someone has to spend a lifetime on benefits rather than working and paying taxes, but there is so much more that they could perhaps have contributed to society and that opportunity has simply been lost.

In the time that is left to me today, I will mention the benefits system. We have already heard from other Members about it. Time and time again, we see that the assessments for employment and support allowance and for the personal independence payment just cannot cope with people who have fluctuating conditions, or with people who might be able to pass a test but who feel absolutely dreadful afterwards.

My friend scored zero on the test because she was trying to be as honest as possible, and if she was asked whether she could walk up a flight of stairs, she would reply that she could. However, on a bad day it would probably take her an awfully long time and she would collapse in a heap at the top. Actually, one of the reasons she was turned down when she went for the face-to-face assessment was that the examiners said, “Well, you look very presentable and you’ve washed your hair.” I know that she is bedridden for days at a time and cannot wash her hair, but clearly if she drags herself out for an assessment and is well enough to attend it on a particular day, she will try not to look like she has just got out of bed.

[Carol Monaghan]

Does the hon. Member agree that such questions are entirely unsuitable for people with many conditions but particularly for ME sufferers? “Can you walk up a flight of stairs?” “Yes, but it wipes me out for three weeks afterwards.” The examiners are not interested in the “but”. That does not figure in the questions.

[Kerry McCarthy]

Yes, we need a system that is sensitive to the people who are taking the test, rather than being a series of tick-box exercises—yes or no.

Action for ME gave some interesting evidence to the Work and Pensions Committee when it conducted an inquiry into ESA and PIP towards the end of last year. Action for ME cited one case study of a man who, as well as having ME, is registered blind; he can only just perceive some light. He said, “I’m not disabled by blindness. In comparison to living with ME, my blindness is just an inconvenience.” When it came to the assessment, of course, his blindness scored maximum points, but his ME did not register at all. He said, “Actually, with my blindness I can still go out and walk my dog, but it’s the ME that means I’m housebound. With blindness, I can use audiobooks, but my ME means that I just can’t concentrate for any period of time.” But one condition is accepted as a disabling condition, while the other is not. There is a perception that ME is just about being tired all the time but, as one ME campaigner said:

“The difference between ME and just feeling tired is the same as the difference between having a shower and drowning.”

I was going to mention the case of Merryn Crofts, but my hon. Friend the Member for Heywood and Middleton (Liz McInnes) is here and she is her MP. That is clearly an incredibly tragic case—the second person in the UK to have ME recorded as the reason for death on her death certificate.

Instead, I will conclude by mentioning the documentary “Unrest”, a screening of which I attended. Jennifer Brea, a 28-year-old ME sufferer, documented her condition with a camera when doctors told her that her illness was all in her head. Using Skype, she connected with others around the globe suffering with ME, and documented their plight. It is a powerful and moving documentary about the realities of life for many people with severe ME, and I would encourage anyone who is looking to gain a better understanding of the illness to watch it.

Autism

Kerry McCarthy Excerpts

Thursday 29th March 2018 Commons Chamber

[Thangam Debbonaire (Bristol West) (Lab)]

It is truly a pleasure to follow the right hon. Member for Harlow (Robert Halfon), who made an informed and inspiring speech. I also salute the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) for her inspiring leadership and for securing this debate.

My constituency team has put making the world an autism-friendly place at the heart of what we do. We have held an autism-specific constituency surgery, and we encourage other MPs to do the same. We have run a roundtable for employers, and I speak to businesses about what they can do to increase access to jobs for people with autism. We work closely with the National Autistic Society and local organisations such as the Bristol Autism Spectrum Service, SEND a Welcome, and Autism Independence.

[Kerry McCarthy (Bristol East) (Lab)]

My hon. Friend and neighbour has set a wonderful example in Bristol of how we can work with autism services. I will hold my first autism-friendly surgery next Friday in Bristol with the help of the same organisations she mentioned, and I encourage other MPs to see whether they can do the same.

[Thangam Debbonaire]

I am delighted that my hon. Friend is following the example of Bristol West in Bristol East. I have a member of staff who is allocated to lead for me on autism, and we are pushing the council and cultural institutions to work towards the National Autistic Society autism-friendly award. We support children with autism and their parents to get the educational support they need, and we do that because we believe that people on the autistic spectrum should be able to participate fully in our social, cultural, economic and public lives. We believe that all aspects of our lives are better when autistic people are included, and that is true for neurotypical people, as well as for autistic people and their families.

However, too many autistic people are excluded. Too many—far too many, as the right hon. Member for Chesham and Amersham knows—feel excluded, unwelcome, or unable to participate in the world around them as it is. They therefore feel isolated and lonely, and that is bad for us all. It is worst, of course, for children and adults with autism who experience that loneliness. New information from the National Autistic Society estimates that autistic people are four times as likely to be lonely as the general public. Four out of five autistic people who responded to the NAS survey said that they felt lonely and socially isolated some of the time. That is shocking and upsetting.

Such isolation is also bad for the parents of children with autism, who told the National Autistic Society that they fear going out because of public ignorance, or they have experienced being judged because of the behaviour of their child—some hon. Members have already mentioned that, in particular the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan), who spoke so movingly. Such isolation is also bad for the rest of us, because we lose out on the untapped potential that autistic people have to offer as friends, colleagues, participants in civic society, and leaders. Loneliness hurts. Loneliness hurts health, and it keeps too many autistic people from fulfilling their potential.

The Jo Cox Commission on Loneliness has done sterling work on this issue, and recently, the hon. Member for Chatham and Aylesford (Tracey Crouch) was charged with taking on the Government’s loneliness strategy. As they, and the all-party group on loneliness recognise, leaving people to loneliness diminishes all of our humanity. The survey by the National Autistic Society found that 55% of autistic adults want help with social skills, but only 10% actually receive such help; 53% would like employment support, but only 10% receive it; and 70% of autistic adults told the NAS that with more support they would feel less isolated.

Autistic adults experience significant under-employment—only 16% are in full-time work, and a further 16% are in part-time employment. Of the remainder who are not employed, nearly four out of five want to work. Most of us get our daily social interaction from work, and chronic unemployment increases autistic people’s loneliness, as well as keeping them on low incomes and making it harder for them to pursue other interests or travel to meet up with friends, thereby becoming less lonely. A lack of understanding by employers, educational institutions and others is often behind such under-employment and unemployment. I do not wish to repeat what other hon. Members have said, but I refer those listening to the debate to those earlier remarks.

I welcome the appointment of a Minister with responsibility for loneliness, who will be committed to developing a strategy, measurements, and funding for activities to prevent loneliness. Given the high risk of loneliness among autistic people and the parents of autistic children, may I ask the Minister to do everything she can to ensure that the loneliness strategy attends specifically to the needs of autistic people? I further ask her to urge all her colleagues to consult people with autism on that strategy.

Will the Minister tell the House what the Government are doing to help public awareness of autism, and to help and assist employers to review, and if necessary change, their recruitment procedures? We should encourage public and private organisations to make their spaces truly autism friendly and, as I have said before in this place, perhaps we should start by doing everything we can to make our buildings here on the estate, and our working practices—that will be a challenge for me—more autism friendly, perhaps by thinking about the noises and interventions that we sometimes make.

 Orkambi and Cystic Fibrosis

Kerry McCarthy Excerpts

Monday 19th March 2018 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is a pleasure to see you in the Chair, Mr Evans, and I hope that you received my note, saying that I would have to leave before the end of the debate—I am sorry about that.

As my hon. Friend the Member for Dudley North (Ian Austin) said, some of us very much hoped that we would not be back here making the case for Orkambi, because our being here again means that we still have not managed to persuade the Government and the National Institute for Health and Care Excellence to fund it. However, I have been absolutely overwhelmed by the fact that so many MPs have turned out today and that, as has been said, the petition gained the required 100,000 signatures within 10 days. That is phenomenal and I cannot believe that the Government will not listen to that outpouring of support.

Constituents have contacted me about their children, their grandchildren and their friends’ children—I had a lovely email from a family friend who has a little boy aged seven. I particularly want to pay tribute to Lee Partridge in Bristol for his work with the south-west parents cystic fibrosis support group. He lost his daughter Richelle in 2016 to cystic fibrosis, aged 26, and eight months later her sister Lauren died, aged 19, from the same illness. I cannot begin to imagine what that family has gone through, although I have a 13-year-old niece, Maisie, with cystic fibrosis, whom I have mentioned here before.

Maisie has been in pretty good health considering, but I have listened to Members talk about how people’s health can suddenly take a dramatic dip, with their lung function percentage going from somewhere in the 90s way down perhaps to 20, and I realise that I cannot be too optimistic. I can look at her today and say, “This is a happy, healthy child”. Apart from being hospitalised when she was first diagnosed at a few weeks old, she has had intravenous therapy only once, and that was almost a preventive measure because her lung function had dipped a little.

I have visited the children’s cystic fibrosis unit in Bristol and the adult treatment centre at Bristol Royal Infirmary, and many people spend their entire lives coming in and out of hospital, so we have been very lucky, but Maisie still has to have a cocktail of pills. When I spend time with her, her whole life is dominated by which pills she has to take. Every time she eats something she has to take her Creon. She has to have physiotherapy. She has also just been diagnosed with the very rare Wieacker-Wolff syndrome—we have suddenly discovered that one other child in the country has it. I thank the Government for supporting the deciphering developmental disorders study into 12,000 children and adults with undiagnosed conditions that has been carried out over the past couple of years, because it was only through that that we knew what was causing Maisie’s mobility problems and mild learning difficulties. The mobility problems obviously make it more difficult for the physio to be done and for her to be more independent.

[Sir Oliver Letwin (West Dorset) (Con)]

What the hon. Lady describes is a quality of life. Does she agree that, at root, what we are dealing with here is the problem that NICE measures the quality of life-adjusted years and does not measure improvements in quality of life of the kind she describes?

[Kerry McCarthy]

How do we measure the cost to the family? How do we measure Orkambi’s worth? To me, it would clearly be life changing, perhaps even life saving. When my hon. Friend the Member for Dudley North hosted his roundtable, it was reassuring to hear that Orkambi is another step forward—Kalydeco helps only 2% of people and we think that Orkambi could help 40%—and that drugs are in the pipeline, being worked on now, that may bring help to all cystic fibrosis patients in this country. It was said that it is too soon to judge whether the developments, rather than being just life-prolonging, could be life-saving, with cystic fibrosis being a condition that people live with, like diabetes, rather than one that people die from. Surely that is where we want to get to.

The overall picture is that getting one drug on the market is a stepping stone to further research, and it is about buying time, as the right hon. Member for Chingford and Woodford Green (Mr Duncan Smith) said. Maisie is now 13 and it is imperative that she get on such a drug if she turns out to be one of the children who can be helped, because, frankly, we do not have an awful lot of time before her condition might deteriorate. I cannot stress enough how important that is to us as a family. She obviously has hopes for the future. At the moment, she wants to star in musicals, which might be slightly over-ambitious. She has just got back from a horse-riding weekend in Wales.

I finish on that note of buying time. We do not have the luxury of time. We need to see action now from the Minister and we need to look at the overall cost to the health service and to the families. Maisie’s mother—my sister—is an absolute saint. She is a teaching assistant. She works with children with disabilities. She is a forest school leader. What she does in her daily life is wonderful, juggling that with a disabled child and two other children as well. If Maisie takes a turn for the worse, my sister will effectively be removed from the workforce and become a full-time carer. We ought to consider costs like that as well. Let us not look at it as a crude mathematical calculation but as what it means for people’s lives.

Junk Food Advertising and Childhood Obesity

Kerry McCarthy Excerpts

Tuesday 16th January 2018 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

I congratulate colleagues on their excellent speeches so far. As has been said, we have a childhood obesity epidemic in this country. One in three children is overweight or obese by the time they leave primary school. That makes them five times more likely to become obese adults, putting them at risk of the biggest preventable cause of cancer after smoking. This debate was triggered by calls from the Obesity Health Alliance in relation to the campaign linking obesity with cancer, but as we know, type 2 diabetes, heart disease and many other conditions are related to being overweight.

Some interesting research was done a while ago—I did not have time to dig it out—on what happened when young offenders in young offenders institutions were switched from junk food and fast food diets to healthy eating. The change that had for their mental health and behavioural conditions such as attention deficit hyperactivity disorder and aggression certainly needs to be part of the Government’s considerations. A comprehensive 10-year study of children from 100 different countries looked at the links between fast food, asthma and allergies in childhood. I asked the Government whether the public health responsibility deal partners could be part of a discussion on that study, but I was told that the focus at that time was on salt. They were dealing with the low-hanging fruit; it is quite easy to address salty food, but addressing people’s addiction to fast food is far more difficult.

Marketing has a critical influence on children’s behaviour. As Public Health England has said, it constantly influences preference and food choice. Food companies promoting crisps, confectionary and sugary drinks spent £143 million on advertising in 2016. By comparison, the Government spent just over £5 million on their anti-obesity Change4Life social marketing campaign. Those figures show what we are up against and the power of the junk food advertising industry.

It is a decade since Ofcom’s broadcast restrictions on junk food advertising to children came into effect, and they do not go far enough. As has been said, children’s viewing habits have changed dramatically. They do not just watch children’s TV; they also watch family shows, particularly such things as “The Voice” or “Strictly”, or reality shows, where they are regularly exposed to junk food advertising. Research commissioned by the Obesity Health Alliance found that children see as many as 12 adverts for junk food an hour while watching family television shows. I support the calls for a ban on junk food advertising until after the 9 pm watershed. That is supported by 76% of the public and 71% of MPs according to the Obesity Health Alliance. The issue does not need legislation—the Health Secretary could instruct Ofcom to act now, and I am interested to hear what the Minister has to say on that.

As the hon. Member for South West Bedfordshire (Andrew Selous) flagged up in his excellent speech, it is not just advertising that creates an obesogenic environment for children. Walking past outlets selling high-fat, high-salt, high-sugar foods every day can set back efforts to encourage healthy eating. There is no point having all these programmes in schools to encourage children to be more active and to teach them what a healthy diet looks like if they are walking past a McDonald’s on their way to and from school and probably during lunchtime as well, if they are able to pop out.

[Andrew Selous]

The hon. Lady is making an excellent speech with some very good points. She has given credit to McDonald’s for the healthy food it produces. There is no reason why fast food cannot be fast, healthy, delicious and nutritious, is there?

[Kerry McCarthy]

I do not think that I did pay tribute to McDonald’s; I was highlighting McDonald’s as a cause for concern. I am sure that its representatives will be in touch after the debate to tell me that it offers salads, but I am not sure how many secondary school children pop into McDonald’s after school for a salad. I think there was an experiment in Hulme in Manchester where they thought that teaching people about cooking, buying local food and sourcing it in their local community was too large a first step. In a bid to encourage people to eat more healthily, they therefore set up a fast food outlet that was devoted to healthy food. I do not know how that has gone—I think it was a year or two ago—but it shows that it can be done.

Data provided to The Guardian by the Centre for Diet and Activity Research at the University of Cambridge showed that more than 400 schools across England have 20 or more fast food takeaways within a 400-metre radius, while a further 1,400 have between 10 and 19 outlets within the same distance. In my constituency—I apologise; I am going to have a bit of a go at McDonald’s again—we had an application for a new 24-hour drive-through McDonald’s within 800 metres of three schools, and only just over 400 metres from another. As a council, we tried to reject that planning application, partly because of the traffic, litter and noise concerns associated with a 24-hour drive-through. The application also went against advice issued by Public Health England in its March 2014 briefing, titled “Obesity and the environment: regulating the growth of fast food outlets”, which stated that an important function of local authorities is

“to modify the environment so that it does not promote sedentary behaviour or provide easy access to energy-dense food.”

Despite that, the Government’s Planning Inspectorate overruled the council and granted permission for the drive-through to go ahead.

About 20 English councils, including Bristol, have rules banning new fast food outlets from opening within 400 metres or 800 metres of schools—in Bristol it is 400 metres. The Mayor of London recently announced a total ban on new fast food outlets within 400 metres of schools across the capital. However, I agree with the likes of Brighton and Hove City Council that 800 metres, which I think is only a 10-minute walk or so, would be better. It is not in the childhood obesity plan, and the Government need to do more to encourage that.

The sugar tax has been discussed. Children in the UK consume up to three times the maximum amount of sugar that they should, and fizzy drinks are their No. 1 source. We know that there was a real battle to get the levy to where it is now, and it took a long time to get it introduced. It is good that it is forcing manufacturers to reformulate their drinks to come in below the sugar tax threshold, but I am concerned about what will happen to the £10 million that was pledged from the levy to fund school breakfast clubs. It is good that companies are responding, but it is really important that we support our breakfast clubs as well, and I would like to hear from the Minister on that.

I want to say a little about school food standards. For many children from low-income families, school meals provide their main source of nutrition for the day. I would not be surprised if the Labour spokesperson, my hon. Friend the Member for Washington and Sunderland West (Mrs Hodgson), has something to say about that. She has recently run an excellent campaign about changes to universal credit that would have an impact on the number of children receiving free school meals—their main source of healthy food. Legislation introduced by the last Labour Government required all schools to comply with specific food-based and nutrient-based standards, which resulted in significant improvements in the nutritional quality of school food, as shown by research from the Children’s Food Trust.

The July 2013 school food plan sets out 17 actions to transform what children eat in schools and how they learn about food. That has helped, and the new school food standards were widely welcomed when they came into force in January 2015. I was concerned that those standards do not apply to academies and free schools that opened between September 2010 and June 2014, but I received a response to a written parliamentary question yesterday, which said that more than 1,400 academies founded during that period are voluntarily following the standards. I am not sure how many are therefore not following those standards, which I think should apply across all schools.

I would like to ask the Minister about something that I have been doing on an ongoing basis. The Government have the “eatwell plate”, which is meant to set out guidance for what a healthy diet looks like, with certain proportions according to dietary needs. Rather than just being a paper exercise which can be found on the Government’s website, that ought to be used as the norm for how we publicly provide food, in not just schools, but hospitals, prisons and other facilities. Now is neither the time nor the place to go into other issues about cancer-causing foods, but given the proven link between processed meat and cancers such as bowel cancer, for example, the fact that at the moment schools are told to provide red meat three times a week and processed meat once a week needs to be looked at.

In conclusion, it is all very well talking about trying to change people’s behaviour and responses to the stimuli around them, but the Government could do more to remove temptation from their path. The Government should extend existing regulations to ban junk food advertising until the 9 pm watershed. They should support local authorities, and ideally have a standard approach across the country to tackling the proliferation of fast food outlets near schools—ideally the enforcement of an 800-metre limit. They should also do more to encourage schools to provide healthy food to students.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

Child obesity remains one of the top public health challenges on my desk and for the Government. I congratulate my hon. Friend the Member for Erewash (Maggie Throup) on securing this debate through the offices of the Backbench Business Committee. I also thank the Health Committee for its ongoing inquiry into child obesity. Its Chair is not able to be here today, but she has a great personal interest in this subject. Ministers always say that debates are wide-ranging, useful and interesting, but this one certainly has been—it has been much wider than the title of the debate. We have learned a number of things, not least the shadow Minister’s new year activities. She has learned about the work of the pop band the Editors and advergames in the last week alone, and it sounds like one of her new year’s resolutions is to look into Candy Crush—the things you learn here!

As colleagues who are still here will be aware, the latest figures continue to show that our childhood obesity rates remain too high. About a third of children leaving school are overweight or obese. I and the Government will not accept that. In addition, evidence shows that the deprivation gap in obesity prevalence between children in the most and least deprived areas continues to widen. Again, I definitely will not accept that. My hon. Friend the Member for South West Bedfordshire (Andrew Selous) made that point well. When she first came to office, the Prime Minister spoke on the steps of Downing Street about the burning injustices she sees in this country. This is undoubtedly one of the pillars of burning injustice in Britain today.

The gap continues into adulthood: obese children are much more likely to become obese adults, which increases their risk of developing serious diseases, as we have heard, such as type 2 diabetes, heart disease and, of particular interest to me as the cancer Minister, more than 13 types of cancer—I suspect that is underplaying it—including bowel and breast cancer. The shadow Minister and I share a great interest in that subject, having chaired the all-party group on breast cancer for many years together. Obesity is also a major risk factor for non-alcoholic fatty liver disease, as a number of hon. Members said. I see this as a huge challenge to individuals’ health and wellbeing, and a huge cost to the NHS and the country. Obesity-related ill health is estimated to cost the NHS some £5 billion a year—again, I suspect that that underplays it.

There is no denying that obesity is a complex, far-reaching problem. It will sadly not be solved by one action alone, as pretty much all hon. Members said—my hon. Friend the Member for Erewash said that in opening the debate. Neither will it be solved overnight. It is a tanker to be turned around. We launched our childhood obesity plan in August 2016, informed by the latest evidence and research in the area. It challenges us all—the national Government, local government, businesses, the NHS, schools and families—to play our role in reducing childhood obesity levels. There are many parts of the jigsaw, and many players we need to tackle, including the healthiness of the food we are eating, how much we are eating—portion size—how active we are and the environment we live in. Of course, marketing plays an important part.

As part of the plan, we introduced two key measures to challenge the food and drink industry to improve the healthiness of the food children eat every day, and those policies are already showing positive signs. The soft drinks industry levy, which is set to become law in April, has already seen almost half of the soft drink market reformulate its sugary soft drinks to include less sugar. Companies such as the maker of Lucozade and Ribena —I will be visiting it later this week to see more detail—and Tesco have led the way by removing millions of tonnes of sugar. That is a crucial step forward in improving our children’s health, as the data shows us that sugary soft drinks are the main contributor of sugar in our children’s diets.

[Kerry McCarthy]

This is slightly off-topic, but Lucozade has been named public villain No. 2 after Pringles, in terms of its plastic packaging. The plastic sleeves around the outsides of the bottles mean that they are impossible to recycle. Lucozade and Ribena are particularly bad. Will the Minister mention that too when he is having a go at the company about sugar?

[Ms Nadine Dorries (in the Chair)]

Order. I will allow that, Ms McCarthy, but that is the only off-issue topic.

Deafness and Hearing Loss

Kerry McCarthy Excerpts

Thursday 30th November 2017 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is a pleasure, as always, to see you in the chair, Mr McCabe. I thank my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) for securing this important debate. The contributions so far have been fantastic.

There are two issues in particular that affect deaf and hard-of-hearing people that I wish to raise today: the accreditation of children’s hearing services, and the cap on the Access to Work scheme grants, which have already been mentioned. There are more than 50,000 deaf children across the UK and an estimated 794 deaf children in the Bristol area alone. For those children, high-quality audiology services are vital to carry out tests, fit and maintain hearing aids and provide rehabilitative support. Despite that, the Government have stopped mandatory inspections of services, instead replacing them with the improving quality in physiological services accreditation programme. Since the voluntary programme started in 2012, only 15% of children’s audiology services have achieved IQIPs accreditation. That means that 85% cannot guarantee that their service is good quality. That lack of transparency is unacceptable and leaves far too many families in the dark about the quality of their child’s audiology service. Obviously, it is of immense importance to parents that their children have access to good services. Some services have stepped up to the starting blocks by signing up to the scheme, such as St Michael’s Hospital in Bristol which serves my constituents, and a few are nearing the finish line and accreditation, but too many are not taking part at all.

The National Deaf Children’s Society, through its Listen Up! campaign, is calling on the Government and NHS England to make assessments of children’s audiology services mandatory and for information from these assessments to be publicly available. I support that campaign and implore the Government and NHS England to implement changes to help ensure that deaf children get the quality of service they deserve. That could make so much difference to their future life chances.

The second issue is the cap on Access to Work grants. As we heard from my hon. Friend the Member for Poplar and Limehouse, Access to Work enables many disabled people to overcome work-related obstacles by providing practical advice and support, and grants towards extra employment costs that cannot be met by employers as reasonable adjustments. A Government review in 2004—some time ago—suggested that for every £1 spent on Access to Work, £1.48 was generated for the Treasury. I am deeply concerned about the effects of the cap on Access to Work grants that the Department for Work and Pensions imposed for new claimants in 2015 on the career prospects of deaf and hard-of-hearing employees. That cap is due to come into force for existing claimants in April next year. It is currently set at £42,100 per year, which is one and a half times the national average salary. Although that may be enough support for some people, for others it is not.

I was contacted about this debate by a deaf constituent who uses British Sign Language and works as a disability adviser at an education establishment. Access to Work helps him participate fully and equally at work by paying the cost of communication support—namely, British Sign Language interpreters. Such support is inevitably expensive —it is necessary to pay people’s wages—so it is unlikely to be classed as a reasonable adjustment for his employer. At the moment, he can access those interpreters’ support throughout his working week. The cap means that he will be able to book interpreters for three days a week at most, leaving him with two days when he will not be able to communicate with his colleagues and clients. That means he will be unable to do his job effectively.

Access to Work revolutionised deaf people’s career opportunities, shattering the glass ceiling that previously limited them to manual jobs. It is largely due to Access to Work that deaf people have progressed as far as their talent allows. There are now deaf chief executive officers, deaf intermediaries working at the Ministry of Justice, deaf theatre directors and deaf social workers. Yet research conducted earlier this year by DeafATW found that the cap on Access to Work grants is already having a detrimental effect on the deaf community. We heard the figures from my hon. Friend the Member for Poplar and Limehouse. On behalf of my constituent and all those in the deaf community who have benefited or stand to benefit from that scheme, I implore the Minister to listen to what is being said, remove or raise the Access to Work cap, and once again lift the ceiling on the career aspirations of those who are deaf or hard of hearing.

Contaminated Blood

Kerry McCarthy Excerpts

Thursday 20th July 2017 Commons Chamber

[Jackie Doyle-Price]

My hon. Friend makes a good point. That is exactly the sort of thing we need to hear from this consultation when we are setting the scope, and clearly access to treatment is very important. I encourage him to ask his constituent to write in and make those points.

[Kerry McCarthy (Bristol East) (Lab)]

I think there is a consensus across the House, because everyone has made the point very clearly that they do not have confidence in the Department of Health running the inquiry. I expect an announcement from the Minister soon. If the Cabinet Office is appointed, it does have a track record of taking rather a long time with inquiries, so quite often that is used to kick things into the long grass. Can she assure us that it will be a speedy but thorough inquiry?

[Jackie Doyle-Price]

The speed at which the inquiry reports will be determined by the chairman, because it will be independent—that is the point. At the moment the Department of Health is leading on conversations, but the inquiry will be independent; it will not be run by the Department of Health.