Burrswood Hospital, Kent (UK) - new statement on in patient services for ME/CFS

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charles shepherd

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Burrswood Hospital, Kent (UK): new (December 2015) statement on in patient services for people with severe ME/CFS:
http://www.burrswood.org.uk/sites/default/files/CFS ME statement Jan 2016.pdf

More information on Burrswood Hospital:
http://www.burrswood.org.uk
NHS Choices reviews:
http://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=90122

Press report from MEA website:
http://www.meassociation.org.uk/201...struck-down-by-me-daily-express-31-july-2014/
And video link:
http://www.meassociation.org.uk/201...s-shown-on-bbc-news-south-east-5-august-2014/

I have referred a number of people to this hospital and visited the hospital. The feedback from people who have been there has generally been positive or very positive and I was very impressed by both the facilities and way in which all members of staff cared for people with ME/CFS, many of whom were severely affected

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
wdb

wdb

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On admission: "an initial assessment is made to confirm the diagnosis." (Guideline 1.6.1.1) We use both the Oxford Criteria and the Canadian Clinical Criteria in this assessment. Only if indicated are blood tests taken to either exclude other conditions or to monitor potential biochemical abnormalities.

The objectives of the programme are: "sustain or gradually extend, if possible, the person's physical, emotional and cognitive capacity and to manage the physical and emotional impact of their symptoms." (Guideline 1.6.2.1)

The primary tools used to meet these objectives is: ‘Whole Person Care’. It is the working together of Nurses, Doctors, Physiotherapists, Chaplains and Counsellors which ensures patients have the best chance of managing symptoms and improving their functioning and quality of life. Doctors ensure as much as possible that any underlying or accompanying medical issues and symptoms are addressed. The Physiotherapists enable the best supportive resting positions, posture and appropriate level of activity. Nurses offer the personal care that is needed and help maintain as much independence as possible. Chaplains offer the possibility of journeying with and developing a deeper spiritual response in the midst of a very challenging illness and life changes. Counsellors integrate a variety of psychotherapeutic modalities such as Person Centered Therapy, Psycho dynamic Therapy and Cognitive Behavioral Therapy (CBT) and use whichever modality is most appropriate for the individual patient.
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To be honest it sounds like one of the last places I'd ever want to end up at.
 
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Bob

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@charles shepherd, do you know if there is any indication of how severely affected patients report their experiences there, compared with mildly and moderately affected patients? It would be useful to know if they are sensitive to the needs of severely affected patients.
 
Apple

Apple

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I believe this is the place where Jessica (the world of one room) went and they helped her get to the point where she could stand up for the first time in 9/10 years. They were very supportive and weren't aggressive with their treatments at all. So this saddens me.
 
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charles shepherd

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wdb said:
To be honest it sounds like one of the last places I'd ever want to end up at.
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I normally regard website statements from hospital service providers with a degree of caution

I base my support on Burrswood Hospital on the basis of:

1 a detailed personal visit to the unit where I met all the staff involved in patient care
2 feedback from people who have been there and/or carers/parents of people who have been there
3 feedback from people I have personally referred to Burrswood
4 regular personal contact with one of the physicians at Burrswood - Dr Paul Worthley
 
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charles shepherd

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Bob said:
@charles shepherd, do you know if there is any indication of how severely affected patients report their experiences there, compared with mildly and moderately affected patients? It would be useful to know if they are sensitive to the needs of severely affected patients.
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From both my personal visit and feedback from people with severe ME/CFS who have been there, I take the view that the staff take a very caring and sensible approach to management of ME/CFS. Burrswood is not offering a miracle cure based on expensive and speculative forms of treatment based on drugs and supplements. Their approach involves a detailed clinical assessment and a very pragmatic and flexible approach to management which is based on individual circumstances. And as I know from recently meeting and speaking to the parents of one (severely affected) young person who was an in patent last year for several weeks this admission has been of considerable help.
 
wdb

wdb

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charles shepherd said:
I normally regard website statements from hospital service providers with a degree of caution

I base my support on Burrswood Hospital on the basis of:

1 a detailed personal visit to the unit where I met all the staff involved in patient care
2 feedback from people who have been there and/or carers/parents of people who have been there
3 feedback from people I have personally referred to Burrswood
4 regular personal contact with one of the physicians at Burrswood - Dr Paul Worthley
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Are you able to be more specific, is there anything in the website statement that you know to be inaccurate or out of date ?
 
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charles shepherd

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wdb said:
Are you able to be more specific, is there anything in the website statement that you know to be inaccurate or out of date ?
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I hope you will be OK when I say I have a huge pile of work to plough through this afternoon and can only devote a small amount of time to various social media sites I contribute to. In other words, I just don't have time right now to go through the Burrswood Hospital website section on ME/CFS and produce a critique. In generic terms, a lot of hospital service providers here in the UK are almost forced to produce public statements on what they do that are in line with NICE guidelines - otherwise their service would just not exist, or they would not get NHS referrals. What happens in real life, even in many of the NHS units, is a far more flexible and pragmatic approach (i.e. not involving CBT or GET) than what is recommended by NICE!
 
Artstu

Artstu

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Confusing to say the least

Burrswood Hospital closes its doors to patients with severe M.E. | 12 January 2015
The Burrswood Hospital in Groombridge, Kent, has suspended its in-patient services for people with severe ME/CFS because of the shortage of trained nurses and the need, which it can no longer fulfil, to bring in specialist and multi-disciplinary support from outside.


http://www.meassociation.org.uk/201...-to-patients-with-severe-m-e-12-january-2015/
 
K22

K22

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Surely the issue for debate is that they no longer take the very ill. Jessica Taylor, who is linked to above, probably wouldn't be admitted under new policies so it doesn't matter that they cared for her well once. Jessica was, from the severe circles I mix in, more the exception than the rule although her story drew a lot of publicity& was over used as a representation of uk severe ME care generally. What people might not know is she had spent over a year at Burrswood age 16, or around that, where they just did her care & tube fed her as she was so ill physio & rehab wasn't possible, then she went home for 4 years to further convalesce. From what I've read her improvement & recent rehab had already begun at home, it wasn't a miracle turn around by them & hydrotherapy. It's Jessica's local hospital though, which might explain her getting long stay NHS & charity funded care there. Before now other very severe people have been turned down by Burrswood as too severe, too unstable or they couldn't access funds.

I read today Dr Paul has reduced hours at Bureswood which might explain this new more uniquivocal position & im glad for clarity as often Burrswood has obscured the dearth of severe ME care whilst for many not being an option. I don't doubt at all that the hospital which is a luxury, Christian one at £3000 /wk with private room, luxury grounds etc offers good, bespoke holistic care & rehabilitation support, albeit with too much embracing of the standard uk CFS NICE approach. The stays of 2-3 average weeks are short for anyone severe though & if it won't take the very ill we have to have more focus on getting good care in & outpatient for this group in uk. Which hasn't been touched on on this thread?!! Severe ME issues ignored again.
 
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charles shepherd

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Artstu said:
Confusing to say the least

Burrswood Hospital closes its doors to patients with severe M.E. | 12 January 2015
The Burrswood Hospital in Groombridge, Kent, has suspended its in-patient services for people with severe ME/CFS because of the shortage of trained nurses and the need, which it can no longer fulfil, to bring in specialist and multi-disciplinary support from outside.


http://www.meassociation.org.uk/201...-to-patients-with-severe-m-e-12-january-2015/
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I haven't had an opportunity to speak to Dr Paul Worthley about this decision but the statement indicates that they are having difficulty in recruiting the sort of nurses they need (as is very common throughout the UK NHS) and they are also having difficulty in obtaining help from other members of a multidisciplinary ME/CFS team who are not part of the normal staff at Burswood - where such help is required. Please note that this is a fairly small hospital.
 
K22

K22

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92
Well the NHS hospitals are still recruiting the thousands for acute care they provide. Few People with very severe ME need much (as in hours and hours) trained nurse care. Most , 99%, bedridden live in the community cared by family or carers. It's not just the smaller percent with syringe drivers, catheters & tubes they have as exclusionary criteria. They must be very short staffed of nursing assistants , as they would do most of the care.
 
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Valentijn

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Excluding severe patients would be in line with the NICE guidelines for GET. I'd be quite worried that the clinic is in the process of drastically changing direction to take a more psychosomatic route.
 
K22

K22

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The confusion for me is about whether they are not accepting only the very severe , as suggested here

“Please click here for full details of our care packages and prices and for information about How to Book.
It was with regret that the senior clinical team and the senior management team of Burrswood recently reached the decision to suspend the clinical inpatient service for people with CFS/ME at the most severe end of the spectrum. Our exclusion criteria for CFS/ME patients are as follows:
• History of being entirely bed bound
• Entirely dependent on others for all care including feeding
• Severe sensory hypersensitivity
Please see the attached statement for further information.”

http://www.burrswood.org.uk/hospital/categories_of_care/chronic_fatigue_syndrome

Or wish to focus on the mild-moderate as suggested here (link to this statement is in the original post)

CFS/ME Service at Burrswood

Burrswood is rightfully proud of the CFS/ME service that has been provided in recent years within the inpatient unit at Burrswood. It is therefore, with regret that that the senior clinical team and senior management team of Burrswood has reached the decision to suspend the clinical inpatient service for people with CFS/ME at the most severe end of the spectrum.

Our service for people with mild-moderate forms of CFS/ME will continue. We are aware of the impact that this decision will have on a small number of people, and those that care for them, but this decision has been made following a careful review of the factors affecting care for this group of patients. These factors, outlined below, have impacted Burrswood’s ability to effectively and safely care for those most severely affected by CFS/ME.

The provision of this service for people with severe forms of CFS/ME has become increasingly difficult to sustain for the following reasons:

  •  The difficulty in recruiting registered nurses in the context of a national shortage of RNs.

  •  The need at the severe end of the spectrum for increased specialist medical support for the

    clinical team in managing CFS/ME patients.

  •  Increasing awareness that people with severe CFS/ME need specialist input from other

    healthcare disciplines and specialist services that are not currently available at Burrswood.

    We will be keeping all these factors under review as we continue to look at what we can do well. We will provide more information when the current review is complete.

    The Burrswood website will provide more detail about criteria relating to mild-moderate and severe CFS/ME and the Burrswood admissions team will be happy to receive telephone calls/emails from those needing further clarification or anyone wishing to discuss an individual circumstance.

    23rd December 2015
 
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vikkilouise

vikkilouise

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So the letter arrived today so I no longer have to pretend I don't know Burrswood hospital is closing. It plans for now to do out outpatient but close the hospital wing and no longer do inpatients (which means those of us who have relied on it for years are screwed!)
 
K22

K22

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Wow, that's really surprising they're closing inpatient completely. So last years focus on the very severe being excluded was actually just the thin edge of what was to come really. I wonder why, as they didn't seem to have shortage of interest.

That's sad news for the MEEPS who used the service and a loss of expertise.

From an ME POV there needs to be concerted action to get decent, appropriate medical inpatient facilities for severe ME that goes beyond people being admitted for rehabilitation if they can provide funding but can also offers assessment, emergency and acute needs care for all. I have been in the NHS wards where the elderly are swiftly moved on to specialist stroke units for expert & condition appropriate facilities & help. I know for brain injury there is similar. In UK we are failed by a CFS model which dumps severe ME care, if there's any at all, in with services for Fatigue & MUS & without medical expertise/recognition they deserve.

Burrswood seemed to step abut outside the NICE guidelines in its prescriptions so that will be a loss. I'd often hoped that they could be joined in a severe ME research effort, which obviously won't happen now.
 
Keela Too

Keela Too

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The severe seem to be such a neglected population.

And the mild and moderate are currently at serious risk of becoming severe due to the GET recommendations of NICE.

When, oh when, will sense prevail and GET be removed from NICE as a treatment suggestion?

Meh.....
 
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