Consultation on closure of the Bath/Wiltshire/Swindon LC Service

[Lila]

This is an opportunity to comment on the BSW ICB proposal to close the LC Service and "provide support" through general service provision and an online support course about self management.

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I took the opportunity to say that from personal experience this is unsafe as most general services do not understand the concept of post-exertional malaise and it's potential for permanent harm.

I took the opportunity to comment that a combined specialist service for fatiguing illness with specialist doctors would be a better alternative. I commented that the Bath Fatigue service had no medical doctors which is inadequate for the serious disabiling conditions it is supposed to support.

I also suggested they read the ME/CFS delivery plan (better than nothing I figured).

Anyway it would be helpful if others felt they could respond as they will find it harder to justify their proposal if the consultation overwhelmingly suggests it's inadequate.

Thank you.

(edited for typo)

 

[Yann04]

How’s the Bath LC Clinic? If I recall the “CFS” clinic at Bath is notoriously one of the worst in the country?

 

[Jonathan Edwards]

I think it is very hard to judge whether this is a bad move or a good move. Inasmuch as a service is being closed it looks bad. But ultimately I think it is better that ME/CFS and Long Covid are both dealt with through general services rather than in isolation. By general services, though, I mean hospital physicians in a relevant specialty.

If a clinic without doctors closes then there is a chance that people will be referred to clinics with doctors - but it all depends on the local circumstances.

 

[Lila]

How’s the Bath LC Clinic? If I recall the “CFS” clinic at Bath is notoriously one of the worst in the country?

Sorry edited as I misread your reply.

Bath "CFS" clinic could offer my almost severe daughter pretty much nothing. They don't have doctors or prescribers I believe.

But the Wiltshire LC clinic has a specialist GP and I found them helpful. They assessed my postural tachycardia and provided medication and arranged equipment and support letters. I was discharged a little better than when I was referred. So I think it has value although far from the medical treatment we hope for.

 

[Lila]

I think it is very hard to judge whether this is a bad move or a good move. Inasmuch as a service is being closed it looks bad. But ultimately I think it is better that ME/CFS and Long Covid are both dealt with through general services rather than in isolation. By general services, though, I mean hospital physicians in a relevant specialty.

If a clinic without doctors closes then there is a chance that people will be referred to clinics with doctors - but it all depends on the local circumstances.

I don't know what specialty clinics they would be referred to. I found it astonishing that my adult daughter was so unwell for years and had never seen a doctor beyond the GP. Rheumatology weren't interested. She's now under general cardiology but they are only focused on the cardiac bits not fatigue.

I did suggest a service for fatiguing illnesses led by specialist medical doctors would better. I agree re hospital based. Locally there is a drive for more services to be delivered in the community all delivered by HCRG.

The LC service at risk of closure did at least have a specialist GP which was helpful to me. I also found the service helpful with equipment and support letters as well. It was much better than nothing.

 

[Kitty]

But the Wiltshire LC clinic has a specialist GP and I found them helpful. They assessed my postural tachycardia and provided medication and arranged equipment and support letters. I was discharged a little better than when I was referred. So I think it has value although far from the medical treatment we hope for.

That sounds as if they're doing what they can within the bounds of what's possible, given that no treatment exists yet. I'd have found it helpful to have had access to a specialist GP at any point in my illness.

 

[NelliePledge]

That sounds as if they're doing what they can within the bounds of what's possible, given that no treatment exists yet. I'd have found it helpful to have had access to a specialist GP at any point in my illness.

Yep. Support letters were specifically ruled out by CFS clinic i reckon that would be an improvement if available to all.

 

[Lila]

That sounds as if they're doing what they can within the bounds of what's possible, given that no treatment exists yet. I'd have found it helpful to have had access to a specialist GP at any point in my illness.

I never saw him face to face and he was shared by 3 areas I believe but they sent a physio to do a standing test at my home and I sent record sheets and photos by email and then they discussed my case with him and he prescribed ivabradine.

They also asked my GP to prescribe H1 and H2 blockers.I found it helpful with my employer too as there was some NHS validation that I was unwell.

Contrast to the Bath "cfs" clinic where my adult daughter was referred to only seemed to offer group sessions on pacing and a referral for equipment from the community team.

I feel it's just cost cutting to also reduce the LC service to an online pacing course.