Myalgic Encephalomyelitis
Debate between Ashley Dalton and Rachael Maskell(1 week, 4 days ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
It is a pleasure to serve under your chairship, Mr Mundell. I congratulate the hon. Member for Wells and Mendip Hills (Tessa Munt) on securing this debate, and pay tribute to her for her continued advocacy on behalf of people living with myalgic encephalomyelitis. Her work has ensured that the voices of those affected are heard at the highest levels of Government, and I am happy to accept her invitation to meet her and stakeholders, and the invitation from my hon. Friend the Member for Leigh and Atherton (Jo Platt), the chair of the APPG.
I thank all hon. Members who have contributed today, and I particularly acknowledge all the constituents they have referred to. They all deserve the very best care from our NHS. I will endeavour to respond to as many of the issues raised as I possibly can. If I have not covered something, my officials will take notes and follow up in writing.
Rachael Maskell (York Central) (Lab/Co-op)
I am really grateful to the Minister. We know that, at the heart of this, we need to ensure that all clinicians have a basis of training, and that is certainly missing at the moment. We see misdiagnosis, and we see some provision, including fatigue clinics, providing the wrong interventions. Will she ensure that there is a strategy around training clinicians and making it mandatory?
Ashley Dalton
I will come later in my remarks to the training that is being rolled out as part of the delivery plan.
Myalgic encephalomyelitis—better known as ME—and chronic fatigue syndrome, which I will refer to from now on as ME/CFS, is a condition that affects an estimated 390,000 people in the UK. Its symptoms can be profoundly debilitating, impacting every aspect of daily life, from work and education to family and social life. For those with severe or very severe ME/CFS, even basic tasks such as sitting up, eating or speaking can become impossible. We recognise the devastating impact this condition has on individuals and families. For too long, people with ME/CFS have faced stigma, misunderstanding, disbelief and inconsistent care.
Postural Tachycardia Syndrome
Debate between Ashley Dalton and Rachael Maskell(1 month, 2 weeks ago)
Westminster HallRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
Ashley Dalton
I thank my hon. Friend for her intervention. As we know, guidelines are only as strong as the evidence and research that they are based on. We need systematic, robust data to determine which treatments and interventions are most effective.
While we are backing our life sciences sector to come up with tomorrow’s treatments for long-term conditions, we are also directly funding research through the National Institute for Health and Care Research. The NIHR is currently backing a study, known as the LOCOMOTION study, with more than £3 million to examine the connection between long covid and autonomic nervous system disorders, especially PoTS. The NIHR funds research proposals through open competition, based on their scientific quality, value for money and impact on patients. The NIHR welcomes research proposals, and I appeal to any researchers to apply with proposals for PoTS-related research that this Government could fund. We want to see proposals and fund those that can be brought forward. Those researchers’ work could be life-changing for thousands of people across our country.
Locally developed care pathways are clearly important for supporting people with PoTS, because they help to address the condition’s unique challenges.
Rachael Maskell
There are very few PoTS specialists across the country. Will the Minister meet those specialists to hear why they are facing barriers, and work with them to ensure that they can practise the medicine they know works?
Ashley Dalton
The hon. Member pre-empts the end of my speech, where I was going to say that I would be more than happy to meet specialists in this area to discuss how we can move forward. It is important that today’s debate is the beginning of our conversation, not the end of it.
The Government are focused on standardising and co-ordinating care across different settings so that local pathways can address systemic challenges, especially the inconsistent referrals that many people with PoTS face, as has been raised today.