United Kingdom: Isle of Man ME/CFS and Long Covid services (Manx, ME Support IOM)

[Trish]

I can't afford any further negative perceptions by professionals as I'm already walking a very tight tightrope regarding my care and access to care services.

One word though (well, acronym): BACME!!

That's concerning. I remember the MEA making a big thing of the IoM service being set up, but I think BACME is involved wherever there are services in the UK. BACME say they are NICE guildeline compliant, but they also support pacing-up and seem to be focused mostly on the usual stuff where therapists lead sessions telling people how to manage their activity. This is of limited or no value to people with severe ME/CFS as far as I can see. We need services to provide home based medical support and help with getting well trained carers who understand our needs.

You are right that this is a public thread, so are understandably careful about what you say. You could post more about your experiences on a members only thread, but even there, with most members not using their real names, we can't know if someone who runs our sevice is also a member here.

 

[Elara Grey]

That's concerning. I remember the MEA making a big thing of the IoM service being set up, but I think BACME is involved wherever there are services in the UK. BACME say they are NICE guildeline compliant, but they also support pacing-up and seem to be focused mostly on the usual stuff where therapists lead sessions telling people how to manage their activity. This is of limited or no value to people with severe ME/CFS as far as I can see. We need services to provide home based medical support and help with getting well trained carers who understand our needs.

You are right that this is a public thread, so are understandably careful about what you say. You could post more about your experiences on a members only thread, but even there, with most members not using their real names, we can't know if someone who runs our sevice is also a member here.

Thanks for your reply!

The service being set up was definitely a big thing for us, and as I think others have commented previously in the thread, was a very long time in the making. And took a long and difficult campaign.

Completely agree with you regarding what we need from services in terms of help with home-based medical care and help getting carers who have an understanding towards ME and appropriate training.
I really believe that, especially for those with Severe and Very Severe ME, and no matter where you are in the world, paid carers/agencies need to be open to understanding that it requires a unique approach that doesn't fit with what they're used to providing with traditional home care.

Edited to add: I meant to say that although I'm uncertain as to how to feel about the approach being taken, that's not to take away from it definitely being a big thing and positive change that the service was set up. And I hope that and am open to my wariness being proven wrong. There has been some positive feedback for the service. I can't say for sure, but I suspect it may be of some help to those on the mild to moderate severity, and wonder if perhaps that's where the positive feedback is coming from.

 

[Elara Grey]

Do we know the current service has biomedical doctors or indeed many hours allocated for any sort of qualified doctors?

The service is medically led by a GP with a Special Interest in ME/CFS.
In terms of hours, I can't say for sure but I think she's only in the service one day a week.
The other professionals involved work more days but again not sure as to total hours.

I think last time I heard it was headed by a psychologist?

The new service at this time does not include a psychologist.
Manx Care have recently posted within a statement about the future of the service, that access to psychological provision remains at one day a week.
However this is through a referral process and not included as part of the ME/CFS and Long COVID Service provision.