United Kingdom: London - Royal Free Hospital CFS services

Royal Free Hospital

https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

recommended reading still

Fatigue
Overcoming chronic fatigue: a self-help guide using cognitive behavioural techniques (Mary Burgess and Trudie Chalder)
Coping better with chronic fatigue syndrome/myalgic encephalomyelitis: cognitive behaviour therapy for CFS/ME (The self-help series) (Bruce Fernie and Gabrielle Murphy)

 

Hi there,

I've had a referral to the Royal Free Fatigue service - I was able to access it through registering with a GP who serves the area of one of my family members.
Tbh the main reason I wanted to referral was to get a diagnosis so I can take part in DecodeME.
The GP (erroneously) believes they are unable / not allowed to make an ME diagnosis themself, and said that the Royal Free fatigue service can do so.

The referral was made 3rd August, I haven't heard anything from them yet or been given an appointment. I'm a little apprehensive but I'm hoping that they have caught up with where things are at now, and maybe I can prepare / steel myself before the first appointment to make sure we don't end up going down any of the classic dead-end / BPS etc roads. Maybe I can get some free counselling too.

Anyone had any experience with this service?

 

I have discussed or mentioned my ME/CFS symptoms at the Royal Free with consultant endocrinologists, urologists, cardiologists, urological surgeons and a loathsome neurologist. All the consultants seem to know each other.

Not a single one has ever said “hey, you should get a referral to our fatigue service, they are dead good and Dr X there is a genius”.

 

@josepdelafuente

NHS England has information on wait times: https://www.nhs.uk/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/

"The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter."

There is a a link to a local search: https://www.myplannedcare.nhs.uk/ I don't know what department the RF ME/CFS clinic comes under but clicking through to "Pain Management" at the RF gives:

Average waiting time for first outpatient appointment at this hospital for this specialty = 30 weeks

as I might have said in other posts - "the NHS is in crisis !"

 

Haha, a ringing endorsement!

 

Thanks for this info!

 

Based on what they say on the webpage I can't help but think the CQC assessment is spot on:

CQC overall rating
Requires improvement

They are promising an awful lot they can't deliver, sure looks like BPS hiding in plain sight to me.

 

Gabrielle Murphy territory
see
Dr Gabrielle Murphy - UK BPS ME/CFS doctor | Science for ME (s4me.info)

 

I received a call from my GP practice saying that if I wanted to instead be referred to the "Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV " it would be much quicker. Apparently if I haven't heard from them by Thurs 15th I should get in touch with them.

A quick look at their website suggests they might be quite BPS too. Hard to tell. I would mainly be after the diagnosis. Will find the thread about this service and continue there!

 

my bolding.
The treatment pages and recommended reading haven't changed.
The only patient leaflets: 1 on low fibre diet.

https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/#tab-overview

 

job ad
Band 7 Clinical or Counselling Psychologist

https://healthjobs.bmj.com/job/104648/band-7-clinical-or-counselling-psychologist/

would be interesting to know if the number of psychologists at me/cfs clinics in the uk has gone up or down since the new guidelines.

 

same job being advertised. https://findajob.dwp.gov.uk/details/12509539
The website is still problematic:

https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

 

Hang on - that's some serious confusion or misinformation on the Royal Free Fatigue Service site -

"ME/CFS can itself cause frustration, a sense of being isolated or feeling misunderstood, difficulty in relationships and an experience of stigma"



Who on earth wrote that dire gaslighting nonsense?


"ME/CFS can itself cause a sense of being isolated"

"ME/CFS can itself cause a sense of feeling misunderstood"

"ME/CFS can itself cause an experience of stigma"

 

Do you mean like those people who create problems that didn't/shouldn't exist in order to claim to be a saviour that wants to fix it, rather than errm choosing not to create the bigotry in the first place and when you encounter it doing what normal people do and stating it is misinformation and castigating and calling out those propagating it?

 

Ah! This is the medical equivalent of "a bullet flew through a window and hit someone". Just like that. It just flew. Out of nowhere. By no one.

 

The website would compete with the Monty Python Dead Parrot Sketch (or Yorkshire Airlines) if it wasn't that this isn't a joke.

 

They missed off the following? : ,
Shaggy It Wasn't Me (Official Music Video) (uncensored)

https://www.youtube.com/watch?v=T_x6QmuJdms

 

(Mis)Informed by BACME, by any chance?

.