Tynwald has heard that services for M.E. sufferers on the island are lacking and the appointment of a specialist consultant would greatly benefit those being diagnosed and living with the illness.
Minister for Justice and Home Affairs Graham Cregeen said when he was asked to take on the cause after former colleague Phil Gawne left Tynwald, he was unaware of the true impact on M.E. for sufferers and their families.
Mr Cregeen gave the example of Mr Gawne’s daughter Kitty who was first diagnosed when she was at high school and now lives in ‘constant pain’ and has been ‘largely bed bound for much of the past 13 years’. Despite this, Mr Cregeen said Kitty continues to show incredible determination and fight for her health to improve which he said disproved one of the myths around the illness that it’s ‘all in the mind’.
He said: ‘Imagine having led a perfectly healthy life and waking up one morning trapped inside a body that in many areas stopped functioning. Inside, you have the same moral fibre, courage, desire to live as much as you can but no matter how hard you try, you actually get worse.’
Mr Cregeen said the plight of M.E. sufferers and the difficulty with diagnosis and treatment highlighted the need for experts on the island.
Reading from a letter from Mr Gawne’s wife, Mr Cregeen said: ‘In the past, new symptoms had brought new visits to assorted specialists whose advice has been varied but has often been along the lines of “there is nothing wrong”, “get on with it”. Well there is something very wrong if a hitherto health child is so exhausted they can’t sit up, collapses with effort of eating and digesting food, can no longer read, write or tolerate noise, smell, light, begins to develop uncontrollable muscular spasms, suffers serious IBS, dramatic weight loss, sleep disturbance, numerous infections and blood pressure dropping so low they appear to have passed out. Something is very wrong if you start to get messages from school that “your child is lying on the floor, please collect her ” or she describes “that terrible pain that wraps around the back of her neck and body”.
Mrs Gawne’s letter added that having seen her daughter require the use of a wheelchair, she dreaded what would happen next.
He added that ‘misconceptions’ about the illness on and off island leads to difficulties in getting a diagnosis and can lead to misguided information being given to sufferers and their families.
Reading a letter from Kitty, Mr Cregeen said: ‘Thank you for taking the time to consider and understand this incredibly difficult illness. I love my parents but there will come a time when my parents will no longer be here to support me and I really don’t want to spend the rest of my life wholly dependent on the state to help me. Surely I should be able to expect more than this.
‘Please support Mr Cregeen’s motion and work together to find a way in which all people in the Isle of Man will be able to get support on M.E.’
Seconding the motion, Bill Henderson MLC said having met with the Gawnes and listened to ‘the trauma it has caused Kitty’, he recognises there is a small servicer available on island and that ‘we can do better’. He added that there is a stigma that goes with certain conditions which needs to be broken down if progress is to be made in diagnosing and helping sufferers.
‘There is mainstream mental health and mainstream physical health but conditions such as this seem to be hedged into the sidelines’, Mr Henderson added. He called on GPs and other healthcare professionals to increase their knowledge of the illness and how it can be treated and called for treatment of M.E. to ‘become the mainstream’.
Dr Helen Greig, a GP at Southern Group Practice, was granted permission to give evidence directly to Tynwald by members. Dr Greig, a doctor for over 20 years, said she was asked to join the Chronic Fatigue Syndrome Steering Group in 2015, which at the time was designed to raise awareness of M.E.
Dr Greig told members she works with M.E. Support Isle of Man to provide feedback from the group to doctors and other professionals and to promote best practice. She explained that across the UK GP’s follow NICE guidelines from 2007, which she said are ‘outdated’ but what ‘many GPs fall back on’.
In referencing treatment for sufferers, Dr Greig told members of the importance of recognising that it often required each person’s individual condition to be considered and a plan for treatment be crafted around them. While an exact cause is not identified, Dr Greig said it is often caused by a series of viral infections and more recently by Covid-19.
As there is no consultant on the island, many M.E. sufferers have been referred to Occupational Therapy, which Dr Greig said had worked well with people who are ill, but they were constrained by their limited resources. She also told members that a previous application for more support by way of a bid for funding was rejected. And that while some services are available off island, GPs on the island and sufferers recognise that community care is better for those living M.E. both because of their condition limiting their energy levels, but also because technology advances make it possible for phone or video consultations to be held.
Mr Ashford said that the DHSC will seek to implement a combined M.E. and Long Covid multi-disciplinary support service, with physiotherapy and occupational therapy which can draw on the expertise of a consultant in Liverpool.
Apologises and Pledges
During the debate, DHSC Minister David Ashford said he, both as Minister and personally, was ‘very sorry we haven’t got a service up and running in the timeframe that we were hoping to do so’.
He added: ‘I’ve got friends both here on island and on the other side of the water who suffer very badly from M.E. and I know just how debilitating it can be and how important early diagnosis and intervention is. So I can actually say personally I am deeply sorry that it has taken this long to get to this point but I hope from this point on we can develop a service which actually will have a proper meaningful impact on people’s lives.’
Mr Ashford also confirmed that while progress had been made prior to Covid, which included the appointment of a consultant, the pandemic had not only ended much of that work, but led to the consultant staying in the UK.
The Minister also confirmed that his department will work closely with M.E. Support Isle of Man to ‘develop a service so that young people and adults with M.E. can be promptly and accurately diagnosed and supported by the appropriate early intervention and advice’.
He added that the island will seek to introduce an integrated community care model that will incorporate M.E. and long Covid which will be supported by ‘face to face and virtual support and advice including support form experts in the field in the UK using the Liverpool network’.
There will also be improvements made to training and guidance for GPs on island to ‘ensure consistent, standardised and early diagnosis’.
Readers can listen to the full debate here.