We desperately need to be able to diagnose ME at earliest stage

Wednesday 22nd May 2019 7:48 am
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Phil Gawne ()

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Former government minister Phil Gawne has issued a plea to the Health Minister to try harder to give people with ME the service they need.

Mr Gawne was speaking after Health Minister David Ashford told the House of Keys last week that money allocated to set up an ME service in last year’s Budget was not spent.

Mr Gawne, who is the clerk of Arbory and Rushen Commissioners, knows first-hand the devastating impact that ME can have as his daughter Kitty, aged 23, developed the disease when she was 14.

’It is very hard to keep faith in a system which has failed to deliver meaningful support to my much-loved daughter although I do appreciate the efforts of everyone who has tried to help,’ he said.

’It is truly the worst thing any parent should have to experience to watch your child suffer so much and be largely powerless to assist.

’I know how difficult it is to effect change in the Manx government but I plead to Minister Ashford please try harder and give people with ME the help they need!’

Mr Ashford told the Keys last week that £90,000 that had been allocated had not been spent because of recruitment issues and the need to have the right ’pathways’ in place.

He said the department was also looking at a broader service that would include those with fibromyalgia, connective tissue disorders, inflammatory bowel disease and autoimmune conditions, who could benefit from similar forms of treatment.

Mr Gawne said: ’The Minister’s comments are predictable and not very encouraging.

’I know Minister Ashford to be a man of the highest integrity and I’m trying my hardest to continue to believe that he will provide the necessary leadership to deliver an acceptable service for my daughter and the hundreds of others in the Isle of Man who have had their lives devastated by ME.

’Hearing the Minister’s comments in the House of Keys, though, does little to help me keep faith in him.

’We know that the economic cost to the Manx community of not providing adequate support services to people with ME is significantly higher than the sums being proposed by the Minister and his department.’

He added: ’In my daughter’s case, she has never worked and the prognosis for her illness means it is highly unlikely that she will be able to even manage part-time work for years to come.

’She is wholly reliant on family and government support. Had my daughter received the correct diagnosis and better advice when she first fell ill there was a much higher chance she could have recovered.

’The limited evidence available suggests that early recognition and intervention can limit the damage caused by ME but unfortunately Kitty, like so many others, got inappropriate advice.

’Now in her 10th year trying to cope with ME there is little prospect of significant improvement for her and at best she can look forward to many more years of gradual improvement to a more bearable, less isolated life.

Debilitating

’It’s too late for Kitty now, but what we desperately need if we are to reduce the damage caused by this highly debilitating illness is the ability to properly diagnose ME at the earliest possible stage.

’We had this to a limited fashion with our GP ME Champion but unfortunately this role was ended due to lack of funding.

’More importantly for Kitty and the hundreds in Mann like her, we need a service to help her manage the constant pain and fatigue she has suffered for 10 years and suffers every day of her life.

’This at least would give her some comfort as she lives her largely isolated, lonely and difficult life.’

He said psychological support also needed to be provided for people with ME.

’Imagine constantly living in pain, with headaches and fatigue that allow you to function in any meaningful way for less than an hour a day, and then being told your chance of getting better are around 5%,’ he said.

’Up until recently Kitty has either received unhelpful advice from the mental health team or largely been left to get on with things on her own.

’Not surprisingly people with ME are six times more likely to commit suicide and yet they are largely ignored and neglected by our mental health services.’

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