ME/CFS services in the United Kingdom

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).

 

I totally agree. Personally I don't think going to a clinic will get you more brownie points with getting benefits.

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.

 

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.

 

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.

 

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.

 

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.

 

I find it hard to imagine anyone envying the situation in the Uk. In over 30 years of ME I have never been offered any actual treatment!

 

My caree was, but it amounted to CBT and GET as an inpatient at the Maudsley. Guess what the result was.

 

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.

 

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).

 

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).

 

Many do. In fact, I think therapists do the diagnosing in many cases.

 

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.

 

That's interesting @NelliePledge as out GPs attitude has changed in a matter of weeks. CPD? Professional magazine ?