ME/CFS services in the United Kingdom

@Trish also if you’re still employed & needing reasonable adjustments or on long term sick your employers will have an expectation that you’re taking available NHS treatment options. Applying for ill health retirement was similar to applying for benefits. The Pension Scheme Medical Adviser specifically commented on the fact that I had been to CFS clinic in her recommendation that I should be given ill health retirement.
 
All good points, @InitialConditions and @NelliePledge.

It's sad that the only value most of us find in these so called specialist clinics is to provide evidence for pensions, sick leave, work adjustments and state benefits or health insurance.

That being the case, then surely the money would be better spent on a very high quality diagnostic service and a service writing reports for us to enable us to get the financial support we need, not a bunch of useless therapists.
 
Trish said:
All good points, @InitialConditions and @NelliePledge.

It's sad that the only value most of us find in these so called specialist clinics is to provide evidence for pensions, sick leave, work adjustments and state benefits or health insurance.

That being the case, then surely the money would be better spent on a very high quality diagnostic service and a service writing reports for us to enable us to get the financial support we need, not a bunch of useless therapists.
Click to expand...
Absolutely. Currently It’s risky because you can very easily get drawn in to doing more than you can manage. I thought I was going into it eyes open but I still ended up doing a lot more than normal and struggling then was in invidious position of just telling them what they wanted to hear. I now don’t consider I was fully informed to give consent to their approach but luckily I realised in the first couple of weeks that increased activity could be just as bad as exercising. It was affecting my ability to work my part time hours I could see I might end up off sick again so adapted.
 
InitialConditions said:
I just rang the number on the page. Not recognised.

I then rang a different number—the one for 'Central Lancashire Moving Well'—and was told the ME/CFS service was indeed only for those registered with a GP in certain areas. Certainly not a 'Lancashire' ME/CFS service. Therefore, there is no local service for me.
Click to expand...

Again, this may not be true, despite what they have told you on the phone. You would need to find out from your own CCG what CFS/ME services they commission. If they do commission a specialist service, then you can choose where to go anywhere in England. The only restriction is that the service you are choosing has to have a contract with the NHS, but that could be with any CCG (which the service you have phoned does). The service has to accept you and treat you exactly the same as they would a patient who falls within their own area, with the same waiting times etc.

As an example, I had this problem when I wanted to exercise my right to choose where to have my ADHD assessment a few years ago. The ADHD service in my own area was not a specialised one, but just part of general psychiatry. I had not had a good experience with this local community mental health service in the past. Since my CCG did 'routinely commission' an adult ADHD diagnostic and treatment service, then I was entitled to choose any diagnostic service in England. Bristol was my nearest specialist service and had good reviews, so I choose to go there.

Because the Bristol ADHD stated on their website that they did not accept 'out of area' referrals, I emailed them to ask them about their understanding of the NHS legal right to choose. They kept telling me (by email) that they only accepted referrals from certain areas - which did not include my place of residence - and that this was due to their CCG's restrictions. When I sent them all the NHS information on their legal responsibilities to provide out of area patients this choice, they tried to say they were unable to do anything about it, putting it all back on the commissioning body who they had their contract with (i.e. their local CCG)

My GP herself did not understand the system, she thought I would have to make an 'Individual Funding Request' to go out of area - I (the patient) had to explain how the system works to her (the professional)! Once she understood, she agreed to select the Bristol service as my preferred choice.

However, when she referred me via the e-referral system (along with a letter explaining I was exercising my NHS legal right to choose) the Bristol ADHD clinic sent the referral back to her, saying that my CCG would need to agree funding before they could accept me. They should not have had to do that as the whole point of the 'Right to Choose' legislation is that a patient's CCG must pay the individual patient cost to the service that the patient chooses, even if it is not a service they have a contract with.

My GP wanted me to make a complaint to my CCG (Somerset CCG), but I insisted she write to them as it was her responsibility (according the NHS England). She was still confused by the system, but did agree to do it (really, I gave her no choice). Once my CCG actually attended to the GP's letter (it took a couple of months of chasing up, they apologised saying the delay was due to staff sickness) they agreed I did indeed have the legal right to go out of area (under the NHS right to choose framework) and they sorted it all out with the Bristol ADHD service.

Reading the websites of several NHS services it is evident that many individual services across the country are still are not facilitating patients right to choose. However, if patients are prepared to pursue their case, then these services do have to accept out of area referrals.

I just checked and the Bristol ADHD service is still stating it doesn't accept patients outside a list of specified areas (which would be the areas where CCGs have contracted their services directly). So they are still trying to make it very difficult for 'out of area' patients to exercise their legal right to choose their service! They have absolutely no excuse for this, but it clearly dissuades the majority of patients as so few understand the system.

In short, patients need to know their legal rights, be prepared to insist on them and complain to their CCG if necessary to get their preferred service to accept them.

It is worth knowing that this legal right to choose (only in England) applies to both physical and mental health services, including IAPT (not that most of us would want to use the latter, but I'm just mentioning it for completeness).
 
NelliePledge said:
I’m not convinced there’s any benefit of going out of area for any NHS CFS clinic even if one might have acquired a slightly better reputation than another. The negative effects of travel would need to be a big consideration.
Click to expand...
I totally agree. Personally I don't think going to a clinic will get you more brownie points with getting benefits.
Trish said:
Can I ask, @InitialConditions, why anyone would want to access a local ME service in the UK, given that we know there is nothing they can tell us that is helpful, and the staff are likely to be 'therapists' not specialist doctors.

The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
Click to expand...
Agreed. I don't think whether you are diagnosed by a clinic or by a GP is going to make any difference...and you run the risk of going and having to refuse whatever mad ideas they have about increasing activity, and that going on your record.
 
NelliePledge said:
I’m not convinced there’s any benefit of going out of area for any NHS CFS clinic even if one might have acquired a slightly better reputation than another. The negative effects of travel would need to be a big consideration.
Click to expand...

I agree with regards to CFS/ME clinics. I explained about the right to choose specialist services because 1) It really annoys me how almost all services that fall under 'mental health' (CFS/ME, ADHD, Autism diagnostic services, etc.) tell patients that they won't accept 'out of area' referrals, and 2) The information may be useful to members who want to go out of area for services like ADHD, autism, neurology, rheumotology, immunology, elective surgery etc. So many patients are completely unaware that they can go to any service in England that has an NHS contract, even private providers (within the conditions set out by NHS England).

Even for 'physical' health services the GP usually only offers their patients a choice from the local hospitals - the patient has to point out that they are actually entitled to go out of their CCG area.

If I do proceed with the neurology referral my GP agreed a long time ago (but I've not been well enough to progress) then I would probably want to go out of area as my own CCG's hospitals are small, don't have the specialist equipment, technicians or the range of consultants that the larger city hospitals have.

Edit: If you're having an operation or investigation and you can find a private provider that has an NHS contract for that service, then this may make the hospital stay much more 'ME friendly'. I had both my wrists operated on for carpel tunnel some years ago and was offered the local Nuffield hospital on the NHS (this was before I knew about the right to choose, so was just luck). It was only a day proceedure but I got a single room with a private bathroom, a very comfortable bed, a soundproofed room, a personal TV and excellent food. Additionally, attending the outpatient appointments before and after surgery was much more bearable as the waiting room was so quiet and comfortable.
 
Last edited:
Trish said:
It's sad that the only value most of us find in these so called specialist clinics is to provide evidence for pensions, sick leave, work adjustments and state benefits or health insurance.
Click to expand...
indeed.
And the hideous irony is that these things are the very things that many of the staff at these clinics - certainly their BPS 'grand masters' - would consider to be 'enabling'/indulging so called 'secondary gains' & therefore are sometimes refused as being a 'barrier to recovery'....
while at the same time telling us our symptoms are also caused by stress, which we must reduce of course.
 
Trish said:
The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
Click to expand...
I thought the clinics didn't diagnose? No? Some of them don't even have physicians, only therapists and the like.

Same idea, though: ticking boxes.
 
Trish said:
Can I ask, @InitialConditions, why anyone would want to access a local ME service in the UK, given that we know there is nothing they can tell us that is helpful, and the staff are likely to be 'therapists' not specialist doctors.

The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
Click to expand...
In my country, there are no such official CFS clinics, so the issue of being coerced to try CBT or GET doesn't tend to come up with state benefits*.

I prefer the situation here, but others look at the situation in England with envy. It can be hard to hold the line as people can feel the need to lobby for services. Part of the problem can be people can have unrealistic expectations e.g. that we might be able to get Ampligen here on the state system, which I think is very, very, very unlikely to happen at this time.

*It can come up occasionally with private insurance payments.
 
Surprisingly there does seem to be a 'clinic' available in my area.

By 'my area' I mean it's 2 buses, 2 trains, and 18 minutes walk (according to google maps so for me longer) away.

Each way.

No bus stops anywhere near it.

So they don't want people with ME going there, or they would have put it somewhere accessible to someone with ME.

They also don't want to see anyone with my symptom profile, and insist that they are only for people with "medically unexplained fatigue as their main symptom."

I wonder if they ask that before they hand out the piece of paper with the diagnosis on, as it would tend to imply that only people who have that as their 'main symptom' can get a diagnosis of ME/CFS under the current system, as no one else can get access to the place which hands out diagnoses, which is likely very few people who have ME.

Funny old world.
 
Wonko said:
By 'my area' I mean it's 2 buses, 2 trains, and 18 minutes walk (according to google maps so for me longer) away.
Click to expand...
They've done that in my area (Somerset) too! Very difficult to get to even by car, impossible by public transport - they could have located it in the biggest hospital in the CCG's area, which is in the one town with good public transport links and is most centrally located for all county residents. However, they don't give patients a diagnosis, they expect the GP to have done that. Also, they openly state the service is 'only for people who can get to the clinic' (which they define as mild-moderate CFS).
 
Access is the only improvement of the current situation in my area because the service is community based as part of the pain service rather than at the hospital based clinic. But it is still the same content if anything in the last few we’re hearing of people having GET recommended by the pain service whereas that wasn’t coming up in the last couple of years of the clinic.
 
NelliePledge said:
Access is the only improvement of the current situation in my area because the service is community based as part of the pain service rather than at the hospital based clinic. But it is still the same content if anything in the last few we’re hearing of people having GET recommended by the pain service whereas that wasn’t coming up in the last couple of years of the clinic.
Click to expand...

I think integrating 'CFS/ME' services with pain services is likely to cause more harm to us, than good.

My local pain services have been BPS led for at least the last decade.

See the example PDF for what they offer - it is all CBT, GET, activity and psychologically based therapy and 'life-style management':

http://www.somersetpain.co.uk/SiteUploads/18/Uploads/Options offered by the Somerset pain management Service Nov 14.pdf

I cannot see how any of the professionals involved in delivering these types of services will be understanding of 'ME with PEM', it won't be something they will have been taught about. They are much more likely to consider our condition 'CFS - a mental health problem' (aka the Oxford criteria version).
 
adambeyoncelowe said:
Many do. In fact, I think therapists do the diagnosing in many cases.
Click to expand...
Most services ie pain service or ME /CSF do not diagnose in my e perience. The diagnosis is very often an elimination of pathalogical diagnosable disease. My understanding is there is yet to be an absolute accessible diagnostic tool for CSF/ME/FM and other functional disorders.
I work for a pain service and I have seen pts make amazing changes in their lives and benefit hugely from our service. Reducing opiate intake where possible seems to be very important. But other pts struggle and the benefits are not so striking. I think the severity of the disease is sometbing that needs to be taken into account. My understanding is that movement is important if its very gentle. Lets face it the body is built to move. Not moving increases stiffness and pain.
Lifestyle can absolutely affect anyones health. We all need to take note of that. However I am convinced there will be a diagnosis and true recognition of these diseases. In the same way MS has been recognised first in 1868 by Charcot as a collection of symptoms and the 2010 using Poser and Mcdonalds methids of diagnosis. But look how long that has taken. There are better diagnostic tools available now but somehow there are still gaps in knowledge.
 
NelliePledge said:
Access is the only improvement of the current situation in my area because the service is community based as part of the pain service rather than at the hospital based clinic. But it is still the same content if anything in the last few we’re hearing of people having GET recommended by the pain service whereas that wasn’t coming up in the last couple of years of the clinic.
Click to expand...
That's interesting @NelliePledge as out GPs attitude has changed in a matter of weeks. CPD? Professional magazine ?
 
You must log in or register to reply here.
Back
Top Bottom