United Kingdom service: Royal Liverpool and Broadgreen University Hospitals NHS Trust

Somone severely affected for many years was asking if worth going to Broadgreen cfs clinic.

Has anyone up to date info of what it is like as obviously trip likely to cause a crash for someone severe?

 

Perhaps they could have a think about what's likely to be on offer to them, @Forestvon? I suspect the answer is going to be very little, unless the person needs additional medical evidence for a disability benefits claim and a specialist appointment could be helpful to their case.

If the clinic can't prescribe anything more than their local GP could, it may not be worth risking being ill for weeks afterwards – especially if they're likely to be offered unsuitable advice. Feeling really crap AND being hopping mad about being sent to a so-called professional who knows nothing about living with ME is the worst of all worlds...

 

Thanks @Kitty good advice. I have passed it on.

 

Too brain fogged to give detail. Re referred to Liverpool (CFS)/ME clinic.
Main points:

1. Manager is an OT and seems understanding
2. Remit of clinic is only mild to moderate (told this by manager)
3. Therapy is online programme of 3 x1 hour sessions diet pacing etc
4. Over the phone they seem very aware of effects of even a phone call
5. Care plan / management pathway as per new guidelines is not fully catered for but will have another meeting Jan to discuss (stated by manager)
6. Consultant involved only to refer to an OT
7 No provision for moderate/severe borderline + (stated by manager)

sounds as if they will send me back to GP with a letter and liaise with local services I think. Have contacted MEA after first call to update.

 

Had my last phone appointment with Liverpool MECFS clinic.

The situation for anyone in their large catchment: Liverpool only deals with mild-mild/mod.

After quoting NICE to OT who was bewildered about a ‘care plan’ the manager takes me on and writes letter (no care plan) to my GP.

Referred to The Brain Charity but looking like they will offer counselling only.

Told come back only if you want to accept the three seminars.

I never expected medical treatment but had to jump through hoops for my GP. I’m waiting to see how he responds.

Website poor and still tells GP about GET, webpages under construction since last summer.

https://www.rlbuht.nhs.uk/departmen...s-cfsme/information-for-health-professionals/

 

Did the manager or your GP recommend a referral to the brain charity? There is a whole plethora of secondary care medical help for brain conditions.

 

Liverpool OT referred me, The Brain Charity is based in Liverpool so she’s aware of it’s existence. Essentially Liverpool only want to deliver a 3 part self management program. Reading above posts that’s the story across the country.

Referring to the Brain Charity is simply moving pwME on. I read that they help with legal/social issues too.

My GP doesn’t want/feel equipped to help so he referred me to a ‘specialist’ clinic. I struggle to comprehend why charities even entertain the notion that there is any provision.

I don’t suppose my GP will be best pleased.

 

I've got access to my fatigue clinic notes, I've yet to read through them properly but so far it's filled with reference to my central nervous system. So hopefully I can confirm you were referred to The Brain Charity because NHS England class ME/CFS as a Central Nervous System condition.

That's probably all they are funded to do at the moment. Mild - Moderate patients are expected to be able to self manage.

They should be recommending secondary care to your GP at least. Did the manager write to your GP with something of that effect?

Maybe ask your GP to check the CCGs fatigue clinic criteria and show them the NICE guideline part about contacting a specialist for advice on symptom management.

This is the current state of affairs in a lot of situations now. My relative was recently diagnosed with a similar condition but better understood and accepted. They had to push to be seen by a specialist neurologist, rheumatologist and med prescribing pain clinic themself.

When they initially presented themself to the hospital due to crippling pain, they were told it could all be anxiety-related. After requesting a proper investigation by Neurology, it turned out the condition is actually brain and immune-related.

They can now get their GP to prescribe pretty much anything allowed off label, but they still have to present the information themselves.

 

So diagnosis without seeing patients. Seems nothing has changed. The consultant physician should be seeing everyone and leading in drawing up the care and support plan.

Sadly, this is going to continue to remain a problem until we get proper investment. And we will still have to fight to make sure the right kinds of services are invested in, rather than more GET and CBT.

It's an uphill struggle, for sure. I'm so sorry this is happening to you.

 

Just a quick update on Liverpool clinic. I alerted ForwardME earlier this year and the out of date info disappeared fast but as you say webpages under construction message still lingers.

Brain Charity referral never materialised due to capacity. If you look direct with the Brain Charity they do specifically include ‘CFS’.

The ‘feedback form’ after discharge was in smiley face format asking if ‘therapy’ had been effective. I was tempted to write in the ‘what can we do better’ box but just couldn’t face wasting my energy.

The positives were the report outlining my situation and recommending more aggressive action on my insomnia and the blood tests (GP arranged as referral) revealed a couple of issues I wouldn’t have known otherwise. Also my GP has put me in the vaccine group.

 

I'm wondering if anyone has recent experience of the Liverpool ME/CFS service, particularly since the new NICE guideline was published?

The webpages look like they are under development, so I can't see what they offer and if it's remotely worthwhile persuing a referral. https://www.rlbuht.nhs.uk/departmen...gue-syndrome-myalgic-encephalomyelitis-cfsme/

 

@InitialConditions yes apologies too brainfogged to quote you or point you to my old posts but they are here I think on a general ME specialist clinic thread.

 

@InitialConditions - I'm not involved in hospital clinic treatment in the North West but I wonder if @Joan Crawford can help you. She runs the Chester branch of MESH many of whose members use the Liverpool hospital. She posted earlier on this thread.

 

Hi

I've not seen or heard anything recently about this service. I'm aware that several of the medical doctors who referred patients forward in the past have retired so I'm hoping something more positive. They have lacked leadership since Maria Fraser retired quite some time ago. She stopped GET in 2005. After she retired I got mixed messages. And they lacked admin support so were unable to do supportive letters and so forth.

 

Hi
I've replied below
Bw
Joan