Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Debate between John McDonnell and Andrew Stephenson

Wednesday 22nd May 2024 Westminster Hall

[The Minister for Health and Secondary Care (Andrew Stephenson)]

It is a pleasure to serve under your chairmanship, Mr Dowd. I congratulate my hon. Friend the Member for South West Bedfordshire (Andrew Selous) on securing this debate on such an important issue, underlined by the sheer number of MPs who have attended this 30-minute debate today. He is a tireless campaigner for people living with Ehlers-Danlos. He was right to bring some of them to the House back in November, and he was right to bring campaigners again today to sit in the Gallery to ensure that their voices are heard. I also pay tribute to my hon. Friend the Member for Watford (Dean Russell), who spoke from the heart about his wife’s personal experience.

May is awareness month for EDS, and I thank the outstanding charities that do so much to support people living with the condition all year round, especially Ehlers-Danlos Support UK. My hon. Friend said that many people may not have heard of the condition. As Minister for Health and during my constituency work, I come across many people living with debilitating diseases, but it was difficult for me to read some of the stories collected by Ehlers-Danlos Support UK that are collated on its website. Multiple stories show what can be achieved when the correct support is provided, such as the story of Ellie Ovens, who began using a wheelchair in 2018 but returned to France two years later to ski again. That underlines what the hon. Member for Blaydon (Liz Twist) said about how the conditions affect different people in very different ways.

As has been said, although there is no cure for EDS or HSD, treatment can help an individual to manage their symptoms and prevent the condition from worsening. Early diagnosis is key to ensuring that patients are offered the most appropriate treatments and are supported to make lifestyle changes to improve their outcomes. NHS England commissions a national diagnostic service for certain rare types of EDS that can be diagnosed using a genetic test. We do not yet have a genetic test for every type of EDS or HSD, but as the Minister for life sciences I am hopeful about what the future may bring—a point made powerfully by my hon. Friend the Member for North East Bedfordshire (Richard Fuller).

[John McDonnell (Hayes and Harlington) (Lab)]

I thank the Minister for giving way; I know that he has limited time. May I add to the four requests that were made by the hon. Member for South West Bedfordshire (Andrew Selous)? With other conditions for which the Government have appointed an individual MP as the champion, we have seen some remarkable results because of that focus. Will the Government look at appointing a particular champion? I think we have seen the person who is in line today.

[Andrew Stephenson]

That is certainly the kind of thing we would want to consider, among a whole range of things.

In the limited time available, I will try to respond to the specific points made by my hon. Friend the Member for South West Bedfordshire. At the moment, diagnosis for these conditions is based on signs and symptoms, usually by a GP. As my hon. Friend knows, NHS England recommends care for patients with non-inflammatory but painful conditions, and that should be provided in primary and community care settings. That brings care closer to home for those patients, in line with our ambition to get every patient the right care in the right place.

World ME Day

Debate between John McDonnell and Andrew Stephenson

Wednesday 1st May 2024 Westminster Hall

[The Minister for Health and Secondary Care (Andrew Stephenson)]

It is a pleasure to serve under your chairmanship, Dame Siobhain. I pay tribute to my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) for bringing forward such an important debate ahead of World ME Day on 12 May. As Health Secretary, he laid the foundations for our cross-Government delivery plan, and from the Back Benches he has been a tireless champion for people living with ME. I join him in welcoming his cousin to the House today. I also pay tribute to the ME Association, Action for ME, Forward ME and many other outstanding charities that do incredible work in this area.

I thank the right hon. Members for Barking (Dame Margaret Hodge) and for Hayes and Harlington (John McDonnell), my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), my hon. Friend the Member for Devizes (Danny Kruger), the hon. Members for North Shropshire (Helen Morgan), for Putney (Fleur Anderson) and for Strangford (Jim Shannon), the SNP spokeswoman—the hon. Member for Glasgow North West (Carol Monaghan)—and the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), for their thoughtful contributions. I particularly pay tribute to the SNP spokeswoman for the work she has done on the APPG, and to the shadow Minister for coming here today despite his own health challenges.

I will do my best to address as many of the points raised as possible in the time allowed. To start, I will address one of the points made by the right hon. Member for Barking. This is very much a cross-Government piece of work. I will be working very closely particularly with the Department for Education, and others, to ensure that we get this right. It is correct that this is a Health lead, but it is right that it is a cross-Government piece of work.

ME, or chronic fatigue syndrome, is a complex medical condition with a wide array of symptoms. Some people with ME struggle to do even the most basic things that we all take for granted, such as going to the office, seeing a GP, or even taking their children to football. This debate comes at a critical time, as new studies are beginning to pinpoint parts of the brain that affect the condition. A recent report has shown the yearly cost to the UK economy could be above £3 billion. While our understanding is improving, people with ME must receive the right care and support to manage their symptoms and, where possible, to be able to move on with their lives.

Sadly, as my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) has so eloquently set out today, there has been a real lack of awareness among some medical professionals and the wider public, as also highlighted by my hon. Friend the Member for Devizes and the right hon. Member for Hayes and Harlington. For so long, people were dismissed, ignored or even told their symptoms were all in their head. However, as anyone who lives with ME knows, it is so much more than just feeling very tired; for a quarter of sufferers with severe symptoms, it is truly debilitating.

This is why our delivery plan is vital. As my right hon. Friend the Member for Bromsgrove knows, it has two core principles at its heart. First, we must know more about ME if we are able to improve outcomes. Secondly, we must trust and listen to people with ME to improve their experience. That is why the Government published the interim delivery plan last August, proposing a set of actions on research and education, but also tackling those old attitudes and adapting the language we use to describe the condition. Since then, we have consulted on the interim delivery plan to understand where the plan is strong and where we need to go further. I would like to thank the more than 3,000 people and organisations right across the United Kingdom who took part.

As we speak, officials are analysing thousands of responses and we will publish a summary shortly. These responses will be instrumental in developing the final cross-Government delivery plan, which will be published later this year. I completely understand my right hon. Friend’s frustrations, and he makes a powerful case for publishing the plan before the summer. While I cannot make that commitment at this time, I have assured him privately, and I will do so again today publicly, that I will do all in my power to ensure that the plan is published as soon as possible.

Our consultation had a huge response, which is fantastic, as we wanted the broadest range of voices to inform how we shape the plan, but the responses have also shown just how complex the challenges are. Once we have published our response to the consultation in the spring, it is vital that we go back and work very closely with patient groups to finesse the final plan, which could take some time.

As my right hon. Friend has said, people with ME have for too long been ignored and dismissed. That is why we want to take the time to properly understand the challenges they face and listen to the solutions they propose. It is so important that we get this right. I have heard my right hon. Friend, and I will continue to work hard with officials to come up with a plan that delivers for people with ME as soon as possible.

[John McDonnell]

It would be really helpful if the Minister could write to us about the areas that require the finessing for the eventual final plan.

[Andrew Stephenson]

I am happy to provide an update to Members. I hope that when we provide the summary of the 3,000-plus responses, it will shine a real clear light on that, but I am more than happy to write to everyone who has engaged in today’s debate to provide an update, and perhaps to address any points that I am not able to in the time allowed.

Patients can receive the care they deserve only with timely and accurate diagnosis. Sadly, there is no specific test for ME, which can be challenging to diagnose as it shares some symptoms with other conditions, as set out by the shadow Minister. That is why in 2021 the National Institute for Health and Care Excellence published the new guidelines on the management of ME that several Members mentioned. That was a step forward in helping medical professionals understand the condition so that people could be diagnosed as soon as possible. It also set out best practice for healthcare professionals in the management of ME, and the care and support they should offer patients.

Preventable Sight Loss

Debate between John McDonnell and Andrew Stephenson

Tuesday 30th April 2024 Westminster Hall

[Andrew Stephenson]

As a proud Unionist, I am always happy to learn from different parts of the United Kingdom. After I was appointed to my role, one of the first things I did was to go to Edinburgh and visit various universities and companies across Scotland, and I saw some of the great work going on in Scotland. I also met the then Health Secretary, Michael Matheson, to talk about areas where we can work together, particularly on things such as research. However, we can also trial different things in different parts of the country. Many people in this House talk about regional variations, which can be a concern. Nevertheless, one of the benefits of being able to trial different things in different regions is that we can learn the lessons, learn what works and then build on that best practice.

As well as helping our primary and secondary care sectors to reach their full potential, we have a long-term plan in place to support our workforce and put it on a sustainable footing, which is the first ever long-term workforce plan for the NHS. We have again increased training places for ophthalmologists in 2024 and improved training for existing staff, helping them to deliver for patients while reaching their full potential.

The right hon. Member for Hayes and Harlington raised what sounded like a very important and serious issue. He will forgive me for saying that this area is not my specialist subject, but I am happy to raise his concerns with my right hon. Friend the Member for South Northamptonshire. However, I will say now, in response to his comments on laser eye surgery, that refractive laser eye surgery is not generally available on the NHS. Doctors who perform such surgery must be registered with the General Medical Council and the Care Quality Commission. All locations where refractive eye surgery is carried out should be monitored and are required to report any adverse events. As I say, I will be happy to relay his concerns to my right hon. Friend.

[John McDonnell]

I appreciate the Minister’s response; that is really helpful. It would also be useful if a Minister met some of the families who have experienced issues in this area, because over the last 20 years we have had the same ministerial response with regard to regulation, and there have just been too many examples where that regulation and monitoring have not worked and therefore people have been endangered. That is why in the Government’s own report Professor Sir Bruce Keogh recommended further regulation; I think we need to revisit that.

[Andrew Stephenson]

I thank the right hon. Gentleman for making those points. I am not instinctively anti-regulation; indeed, just a few weeks ago I put through this place the statutory instrument on the regulation of physician associates and anaesthetist associates. There are certain parts of the healthcare sector where regulation is very much needed and I would very much advocate for it. As I have said, I will defer to my right hon. Friend the Member for South Northamptonshire. This is her ministerial responsibility, and I am sure she will read the right hon. Gentleman’s comments with interest and may want to take the discussions further.

Finally, on research, the Government are backing scientists and researchers to take strides in understanding sight loss and in making new treatments available. Two years ago, we awarded £20 million to Moorfields Biomedical Research Centre to undertake another five years of vision research, and almost £6.5 million to Moorfields Clinical Research Facility to support cutting-edge treatments for all eye conditions.

Eye care services face challenges and we are taking decisive action to address them, both now and in the long term. The hon. Member for Wirral West and I will never agree on the use of the independent sector. I strongly believe, and think the Labour Front Bench team strongly agrees, that using the independent sector enables us to fully realise our healthcare system’s capacity and to reduce the time that patients spend on waiting lists. I would argue that that does not represent any move to privatise our NHS. As I have said on the record before, the overall proportion of NHS England’s spend on independent sector providers has not increased significantly in recent years. In 2013-14, 6.1% of total health spending was spent on the purchase of healthcare from independent sector providers; in 2022-23, the proportion was 6.5%.

This morning, the shadow Minister in the first Westminster Hall debate, the hon. Member for Denton and Reddish (Andrew Gwynne), talked about making better use of the independent sector to help to ensure that we deliver the best outcomes for patients, and the shadow Minister in this debate, the hon. Member for Birmingham, Edgbaston, reiterated that point. On the use of the independent sector, then, I gently say that it is something on which there is broad cross-party support. While recognising that there are always challenges with the use of the independent sector, it is not in any way a privatisation of the NHS.

I firmly believe that through prevention, innovation and investment in our workforce, we will deliver for all our people across the United Kingdom access to the important healthcare services, including ophthalmology services, that they deserve.