NHS ME/CFS Specialist Services

Home > NHS ME/CFS Specialist Services

 

Please read the following statement before beginning your search


“Most of the NHS specialist services for people with ME/CFS will base their management programme on the use of cognitive behaviour therapy (CBT) and/or two differing approaches to activity/energy management known as graded exercise therapy (GET) and Pacing.

“We suggest that you download the ME Association report on CBT, GET and Pacing, before deciding which of these approaches would be acceptable and may be helpful in your situation.

“You could also take a copy of the summary of the ME Association report to the clinic if you have any questions or concerns about the sort of management programme that is being offered.

“The NICE guideline on ME/CFS is very clear about informed consent and shared decision making, for example:

‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’

 

‘Healthcare professionals should recognise that the person with CFS/ME is in charge of the aims and goals of the overall management plan. The pace of progression throughout the course of any intervention should be mutually agreed.”

 

Dr Charles Shepherd, Hon Medical Adviser, ME Association.


Contact details for the NHS ME/CFS specialist services appear below.

Please remember that while patients can contact any of the services for information, referrals for assessment, diagnosis, and treatment, must be made by your GP or the professional responsible for your healthcare.

While we try to keep the contact information up-to-date the ME Association cannot be held responsible for the consequences of any inadvertent errors.


If you do happen to notice any mistakes, please contact Russell Fleming and he will ensure the necessary corrections are made as soon as possible: russell.fleming@meassociation.org.uk

 


Index

Part 1: NHS Clinical Network Coordinating Centres (CNCCs)

Part 2: Adult NHS ME/CFS Specialist Services in England

Part 3: Children and adolescent NHS ME/CFS Specialist Services in England

Part 4: NHS ME/CFS Specialist Services in Scotland

Part 5: NHS ME/CFS Specialist Services in Northern Ireland

 


Part 1:

NHS Clinical Network Coordinating Centres (CNCCs)

There now appear to be eight Clinical Network Coordinating Centres (CNCCs) across England – championing the development of services and improved clinical care in their area. Each CNCC has an individual, named clinical champion or network co-ordinator. Advice to patients, GPs and carers about services is available from the Network Co-ordinator at each centre.

Northern Region
(North of Tyne, South of Tyne, Teesside, Durham and Darlington, Cumbria North).
Clinical champion: Dr Gavin Spickett, consultant clinical immunologist, The Newcastle upon Tyne Hospital NHS Trust, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne NE1 4LP.

North, East and West Yorkshire
Clinical champion: Dr Hiroko Akagi, Consultant Liaison Psychiatrist, Leeds and West Yorkshire CFS/ME Service, Therapy Suite, First Floor, Newsam Centre, Seacroft Hospital, York Road, Leeds LS14 6WB, Tele: 0113 85 56330 / 0113 85 56331 / 0113 85 56334 or email: cfsme.lypft@nhs.net.

South Yorkshire and North Derbyshire
Michael Carlisle Centre, Lyndhurst Road, Sheffield S11 9BJ
Service manager and lead occupational therapist: Anne Nichol. Tel: 0114 226 3232 Fax: 0114 354 0124 Email: sheffieldcfsmeservice@nhs.net
This is a specialist therapy service for people affected by ME/CFS across South Yorkshire and North Derbyshire. The catchment area covers Sheffield, Rotherham, Doncaster, Barnsley, North Derbyshire County and Hardwick Clinical Commissioning Groups. Referral guidance and summary information can be found by searching for CFS and/or ME at www.sheffieldccgportal.co.uk

East Midlands
Network co-ordinator: Rehabilitation, Level 1, Royal Derby Hospital, Uttoxeter Road, Derby DE22 3NE. Tel: 01332 786657

North London/Essex/Sussex and Hertfordshire
Joint clinical champions: Professor Peter D White, Professor of Psychological Medicine at Barts and the London School of Medicine and Dentistry, and Dr Maurice Murphy, consultant in immunology and HIV medicine.
The Chronic Fatigue Syndrome Service, St Leonard’s Hospital, Block A, Ground Floor, Nuttal Street, London N1 5LZ. Tel: 0203 738 7230, email: chronic.fatique@nhs.net (sic)
(for people living in North London, Essex, Sussex and Hertfordshire).

South West London/Surrey (Sutton)
Clinical champion: Dr Amolak Bansal, Department of Immunology, St Helier Hospital, Wrythe Lane, Carshalton, Surrey SM5 1AA. Tel: 0208 296 4152

Dorset/Hampshire and Isle of Wight
Clinical champion: Dr Selwyn Richards, consultant rheumatologist, Poole Hospital NHS Trust, Longfleet Road, Poole, Dorset BH15 2JB). Tel: 01929 557560

Avon, Wiltshire, Gloucestershire, Somerset
Clinical Champion: Dr Hazel O’Dowd, Bristol CFS/ME Service, The Lodge, Cossham Hospital, Lodge Road, Bristol
BS15 1LF. Telephone: 0117 3408390, Fax: 0117 3408466 Email: CFS.NHS.Bristol@nbt.nhs.uk

 

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Part 2:

Adult NHS ME/CFS Specialist Services in England

Greater London

South London and Maudsley NHS Trust
Chronic Fatigue Research and Treatment Unit, Mapother House, De Crespigny Park, London SE5 8AZ. Tel: 0203 228 5075. Fax: 0203 228 5074
Our multidisciplinary team includes psychiatrists, psychologists, physiotherapists, psychotherapists, doctors and researchers. Director: Professor Trudie Chalder. We offer evidence-based treatment that is routinely evaluated. Our aim is to increase the person’s functioning and reduce the severity and impact of their symptoms. We also offer assessment and treatment for people with fatigue associated with chronic diseases like rheumatoid arthritis, multiple sclerosis, HIV or cancer. We offer diagnostic specialist assessment, routine blood tests, CBT and Graded Exercise Therapy Eligibility: 10+ years (we work in conjunction with our child and adolescent service), long lasting fatigue, profound disability, disturbed sleep pattern. We accept referrals from consultant psychiatrists, community mental health teams, CAMHS, GPs and GP consortia from all over the UK apart from those areas which have their own local adult services.
 
South West London/Surrey (Sutton)
Sutton/St Helier Chronic Fatigue Service, The Malvern Centre, St Helier Hospital, Wrythe Lane, Carshalton, Surrey SM5 1AA. Tel: 0208 296 4152

The team comprises: Dr Amolak Bansal, consultant immunologist; Karen Tweed, clinical nurse specialist; Dr Zoe Clyde, consultant clinical psychologist; Dr Yasmin Mullick, Clinical Psychologist; Clare Inglis, physiotherapist.
 
Royal Free Hospital
The Fatigue Service, Department of Infection and Immunity, Royal Free Hospital, Pond Street, London NW3 2QG. Tel: 0203 758 2000 (switchboard)
Consultant: Dr Gabrielle Murphy (part-time).

Areas covered: Barnet, Camden, Enfield, Haringey and Islington.
 
Royal London Hospital for Integrated Medicine
Adult Chronic Fatigue Service, Royal London Hospital for Integrated Medicine (formerly the Royal London Homeopathic Hospital), 60 Great Ormond Street, London WC1N 3HR. Patient inquiries – tel: 0203 448 2000. GP inquiries: tel: 0203 448 2000, fax: 0203 448 2004, email: rlhimpatients@uclh.nhs.uk (not for referrals).
Service Manager: Loretta Chinwokwu Consultants: Dr Saul Berkovitz, Dr Helmut Roniger and Dr Christian Hasford.

This is the adult service for University College Hospital, London as a whole. Although physically based within the RLHIM, it is not a homeopathic service but offers all interventions recommended by the National Institute for Health and Clinical Excellence in their ME/CFS Guideline – including consultant physician assessment, activity management, exercise and psychological interventions including medical hypnosis, autogenic training and CBT. Clinical lead: Dr Saul Berkovitz. The team consists of three consultant physicians, a senior nurse practitioner, occupational therapist, physiotherapist and dietitian. The team also can advise on appropriate complementary medicine interventions and, in some cases, provide them – such as acupuncture for chronic widespread muscle pain. Referrals through the patient’s GP or NHS hospital consultant]
 
St Bartholomew’s Hospital
The Chronic Fatigue Syndrome Service, St Leonard’s Hospital, Block A, Ground Floor, Nuttal Street, London N1 5LZ (see information under ‘Clinical Network Coordinating Centres’). Tel: 0203 738 7230, email: chronic.fatique@nhs.net (sic)
(for people living in North London, Essex, Sussex and Hertfordshire).
 
Hillingdon Hospital, Uxbridge
Greenacres Centre, Hillingdon Hospital, Pield Heath Road, Middlesex UB8 3NB, tel: 01895 279 374, fax: 01895 279 046, emaiL: hillingdoncfsme@cnwl@nhs.net
Service administrator: Renuka Mahabeer.

We accept referrals from GPs and other NHS professionals on behalf of patients within the boroughs of Harrow, Hillingdon, Hammersmith & Fulham, Kensington, Chelsea & Westminster, Brent, Ealing and Hounslow.All referrals must be accompanied by a complete set of blood results as detailed on our referral form.

Bath and Wiltshire
Bath Centre for Fatigue Services (formerly known as Adult Fatigue Management or Bath and Wiltshire CFS/ME Service), Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath, Somerset BA1 1RL.Tel: 01225 473456 Fax 01225 473411 Email: admin.bcfs@rnhrd.nhs.uk
Our ME/CFS service provides a local, regional and national service for adults with ME/CFS and acts in a specialist advisory capacity for professionals working with adults with the condition. We are a specialist team committed to delivering evidence-based quality services for people with fatigue. All treatment plans are agreed jointly with our patients based on their individual needs. We work closely with service users to review, develop and deliver our services. We currently have eight service users as expert educators who input to our group treatment programmes. Our service provides specialist assessment clinics and treatment based on the National Institute for Health and Clinical Excellence (NICE) guidelines for the management of ME/CFS. We provide group programmes or individual sessions if required.

Bedfordshire
Bedfordshire Chronic Fatigue Service, Disability Research Centre, Poynters House, Poynters Road, Dunstable, Bedfordshire LU5 4TP. Team co-ordinator, Jane Forbes-Pepitone; Clinical Service Manager, Dr Judith Friedman; Associate Director, Hugh Johnston.
The service can be contacted on Tuesdays (9am-1pm), Wednesdays (9am-5pm), Thursdays (9am-5pm). Tel: 01582 470 918. Fax: 01582 709 057 Email: bedscfs@sept.nhs.uk
This service is provided by the South Essex Partnership University NHS Foundation Trust and comes within the ambit of Mental Health Services. An information leaflet for service users can be downloaded HERE.

Berkshire
Berkshire Healthcare NHS Trust provide a CFS service through their Clinical Health Psychology Service.
CFS Service, Clinical Health Psychology, 25 Erleigh Road, Reading RG1 5LR. Tel: 0118 929 6474
“If you think you or someone you care about could benefit from the service please talk to your GP, hospital consultant or other healthcare professional. Unfortunately we are not able to accept self-referrals.
“Once you have been referred to us, you will be sent a letter of acknowledgement and information about any waiting times. You will be sent an initial appointment as soon as one becomes available.
“Your first appointment will usually last an hour and will be an opportunity for you to discuss your current difficulties and to decide how psychology therapy could help support you.”
The MEA understands that home visits are being made to severely ill patients.

Bolton and Bury
The Breightmet Health Centre, Breightmet Fold Lane, Breightmet, Bolton BL2 6NT, tel: 01204 462 765, fax: 01204 462 768.
Principal service lead: Simon Crozier. Manager: Michelle Wardle.
The appointments are at Breightmet Health Centre if in Bolton or the Prestwich Walk-In Centre if you live in Bury.
The aim of the service is to offer group and individual therapy and a domiciliary service for the housebound, in Bury and Bolton.
Principal service lead: Simon Crozier. Manager: Michelle Wardle.

Birmingham and Solihull
Queen Elizabeth Hospital, The Barberry, 35 Vincent Drive, Edgbaston, Birmingham B15 2FG.
Tel: 0121 301 2280. Email: cfs-me@bsmhft.nhs.uk
The service, led by a consultant neuropsychiatrist, offers diagnosis and rehabilitation programme mostly delivered by occupational therapists and specialist nurses.

Bristol, North Somerset and Gloucestershire
Bristol CFS/ME Service, The Lodge, Cossham Hospital, Lodge Road, Bristol, BS15 1LF. Telephone: 0117 3408390. Fax: 0117 3408466.
Email: CFS.NHS.Bristol@nbt.nhs.uk
“Bristol Chronic Fatigue Syndrome/ME Service is a specialist NHS Service for people with Chronic Fatigue Syndrome/ME. The clinical team includes – Occupational Therapists, Physiotherapists, Clinical Psychologists, A Counsellor.”
“We offer an outpatient service to people living in Bristol, North Somerset, and Gloucestershire. We offer a combination of telephone and face-to-face contact, and a telephone counselling service is available for people who have been assessed by the Service. Part of our role is to advise and support other Health Care Professionals in the clinical management of people with CFS/ME.”
“The Service can be contacted by email, telephone or by letter or fax. The best days to contact our administrator by telephone are a Monday, Wednesday or Friday.”
“In 2004, North Bristol NHS Trust was selected as one of 14 specialist centres in the UK for the development of services for people diagnosed with Chronic Fatigue Syndrome/ME. The service has built up considerable expertise over the years in supporting people living with CFS/ME.”

Buckinghamshire
Buckinghamshire Chronic Pain and Fatigue Management Service, Rayners Hedge, Croft Road, Aylesbury, Bucks HP21 7RD, tel: 01296 393319 (ext 24). Fax: 01296 392480. Email: susan.cato@buckspct.nhs.uk
Clinical lead: Dr John Pimm, consultant clinical neuropsychologist. Interdisciplinary service offering cognitive behaviour therapy, graded exercise therapy and self-management outpatient programmes looking at physical, practical and psychological strategies for managing ME/CFS. The service has been running for 10 years. Referrals need to come through a medical practitioner or allied health professional e.g. GPs, hospital consultants, physiotherapists. If people live outside the area then out-of-area funding needs to be applied for.

Cambridgeshire and Peterborough
Botolph Bridge Community Health Centre, Sugar Way, Woodston, Peterborough PE2 9QB Tel: 01733 774 583 Fax: 01733 774 514
Email: cpm-tr.CFSME@nhs.net
The Cambridgeshire and Peterborough ME/CFS Team, based in Peterborough, comprises a Specialist Nurse Practitioner and three Specialist Occupational Therapists. We offer diagnosis of ME/CFS and support in management for adults aged 17+ affected by, or suspected of having ME/CFS.
We must have a referral by a GP due to a requirement for exclusionary test results. While the team is based in Peterborough, the therapists do offer follow-up appointments at two other locations in the county.

Cheshire
There are no specialist ME/CFS services in Cheshire.

Cornwall and the Isles of Scilly
Cornwall and Isles of Scilly CFS/ME Service, The Lighthouse, Royal Cornwall Hospitals Trust. Truro. TR1 3LJ. Tel: 01872 252935.
Providing local clinics, home visits and group work for assessment, diagnosis, rehabilitation and reablement by a multi-disciplinary team for adults and children. The team consists of Dr Julie Thacker, Carol Wilson, Dr Lopez Chertudi, Mel Terry, Debby Reid and Cathy Jackson.
Services provided are based on NICE Guideline 53.
Adult referrals by GP or Consultant via paper or referral management team please.

North Cumbria
North Cumbria CFS/ME Service, Keswick Community Hospital, Crosthwaite Road, Keswick, Cumbria CA12 5HP.
Tel: 017687 245 699 Email:cfs-team@cumbria.nhs.uk
The service is led by Dr Gavin Spickett, Consultant Immunologist and CFS/ME Clinic Champion for the North of England.
Therapy clinics are held in Keswick, and once a month in Carlisle.

Cumbria (South) – See entry for Lancashire and South Cumbria

Derbyshire
Tel: 01332 786657
Clinical lead: Bozena Smith, occupational therapist, Rehabilitation Centre, Royal Derby Hospital, Uttoxeter Road, Derby DE22 3NE.

Devon

South and West Devon CFS/ME Service
Torbay and Southern Devon Health and Care NHS Trust at the following address: 3rd Floor, Union House, Union Street, Torquay TQ1 3YA. Administrator: Louise Swann, tel: 01803 219 859 fax: 01803 219 893 email: swdevoncfsme.sdhc@nhs.net

 
Exeter East, Mid, and North Devon CFS/ME Service
Arlington Centre, Whipton Hospital, Hospital Lane, Whipton, Exeter EX1 3RB, tel: 01392 208 614
The service is commissioned to provide treatment based on the NICE guidelines. Most patients will be seen by one of the two medical consultants involved to ensure that they have a correct diagnosis. Where the diagnosis is in doubt, a proper medical assessment can allow for appropriate further investigation or referral to other specialist services. At the end of the consultation, the consultant will agree a suggested plan of management which may include referral to the therapy team of the CFS/ME service together with some written suggestions to the GP about further investigations or actions to help symptoms. On occasions, it might be helpful for the consultant to see the patient at a later stage after therapy input to see if there is anything further that can be added medically in terms of help or advice.

 
Plymouth CFS/ME Service
Sentinel Healthcare South West Community Interest Company at the following address: Express Diagnostics & Treatment Centre, Plymouth Science Park, Plymouth PL6 8BU. Administrator: Trudi, tel: 0845 155 8297 Email: PCHCIC.SentinelClinicalTreatmentService@nhs.net


The Service Manager/Senior CFS/ME Specialist for both the above services covering the whole of the South and West of Devon.
The team currently consists of a medical lead Dr Robert Gardner, Senior specialist Occupational therapists, two specialist Occupational Therapists and two administrators (as below).
The service is an adult community service providing, assessment, diagnosis and treatment for individuals suffering the complex symptoms of CFS/ME. The service is offered where appropriate to all levels of CFS/ME, mild, moderate and severe. 
Along with the treatment approaches advised by NICE guidelines this service is also part of a national group auditing and implementing research and evidenced-based Mindfulness CBT approaches, to support patients psychologically with coping with this condition. The service is also able to provide extensive knowledge gained through patient experience and reporting.

Dorset
Tel: 01929 557560
This service is provided through an outpatient clinic at Wareham Community Hospital, Streche Road, Wareham, Dorset BH20 4QQ. The service – which has been supported throughout by the Dorset ME Group – celebrated its tenth anniversary in 2009. The clinical lead is Dr Selwyn Richards, a consultant rheumatologist.

Durham and Darlington
CFS/ME Service, Merrington House, Merrington Lane, Spennymoor, County Durham DL16 7UT, Tel: 01388 825700 Fax: 01388 819718 Email: cdda-tr.cfsme@nhs.net
The service only accepts referrals from GPs in Durham and Chester-le-Street, Derwentside, Dales, Darlington, and Sedgefield.

Essex

Essex-wide
Managed from Southend Hospital NHS Foundation Trust, Prittlewell Chase, Westcliff on Sea, SS0 0RY, with most of the therapy services being provided at The Tyrells Health Wing, Benfleet, Essex.
Service administrator: Jenny Livemore. Tel: 01702 385 247 Fax: 01702 385 904

This service offers a consultant assessment for diagnosis, and therapy services including Graded Exercise, Pacing and Activity Management and CBT. These sessions are available at Colchester Primary Care Centre, Broomfield Hospital in Chelmsford and in Harlow. Access to the service is via GP referral.
 
Essex: Queen’s Hospital, Romford
Tel: 01708 435000 ext. 2647
There is a weekly NHS outpatient clinic – for new patients only – at the Queen’s Hospital. Funding must be obtained by the referring GP. GPs should address referrals to Dr A Chaudhuri. Nationwide referrals are accepted.

Hampshire and the Isle of Wight
The NHS service in Southampton closed in April 2014. An NHS referral service, South Coast Fatigue (see below), is now taking referrals.

South Coast Fatigue
South Coast Fatigue, Lancaster Court, 8 Barnes Wallis Road, East Segensworth, Fareham, Hampshire PO15 5TU. Tel: 01489 668 109 Email: info@southcoastfatigue.co.uk.
Director and Specialist Occupational Therapist, Fran Hill.
This is an NHS referral service offering an Interim NHS Mild to Moderate Outpatient Service to patients in West Hampshire, Fareham and Gosport, Southampton City, North Hampshire and South Eastern Hampshire. This interim service is being offered until the end of June 2015 when there will be a longer-term commissioned service in place. GPs can refer directly to South Coast Fatigue and all surgeries have a copy of the referral form. At present, once the referral has been received and screened, the pathway starts with a telephone assessment followed by a face-to-face consultation, then a mixture of telephone reviews and face-to-face appointments to go through the programme.
As part of the interim service, people can also access Mindfulness Groups, Physiotherapy and Dietician sessions.
The Isle of Wight is not part of this interim arrangement and we are advised that people need to ask their GP to apply for an Individual Funding Request (IFR).
South Coast Fatigue also has a bespoke severe service which is for people who are house/bedbound and this has to be applied for via an IFR which the GP does.

Portsmouth Chronic Fatigue Syndrome Service
Chronic Fatigue Syndrome Service, Long-Term Conditions Suite, Ground Floor, Block A, St Mary’s Community Health Campus, Milton Road, Portsmouth PO3 6AD, Tel: 02392 683 386. Fax: 02392 680 201.
Service lead: Rhona McGurk, clinical psychologist
The Chronic Fatigue Syndrome service offers treatment programmes for people diagnosed with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (ME).  This is a community-based service for adults aged 16 years and over. The team consists of a Specialist Practitioner and an Occupational Therapist. The service offers assessments to help GPs confirm diagnosis and treatment programmes aim to improve the self-management of symptoms, increase functioning and improve quality of life.

Harrogate, North Yorkshire
CFS/ME service, Briary Wing, Harrogate District Hospital, Lancaster Park Road, Harrogate HG2 7SX.
Tel 01423 553526 Fax: 01423 553586.
Julie Robinson, occupational therapist (Team Leader).
The service was set up by North Yorkshire and York Primary Care Trusts and covers Harrogate, Ripon, Skipton and surrounding areas. It hopes to expand in the future.

Hertfordshire
Hertfordshire CFS/ME and Chronic Pain Service, Maple Therapy Unit, St Albans City Hospital, Waverley Road, St Albans Hertfordshire AL3 5PN Tel: 01727 897542

Hull and East Yorkshire
A multi-disciplinary service for adult patients with a diagnosis of Chronic Fatigue Syndrome (CFS). Clarendon House, Victoria House, Park Street, Hull, HU2 8TD. Tel: 01482 617735 Fax: 01482 322211. The general contact hours for the service are 9am to 5pm, Monday-Friday.
Our consultant physician is based at Hull Royal Infirmary and the therapy aspect of the service is based at the Department of Psychological Medicine. Referral to physiotherapy can be made by members of the CFS team as appropriate.

Isle of Man
Community Health Centre, Westmoreland Road, Douglas (The old Noble’s Hospital site). Therapist-led service set up in 2007.

Kent and Medway
Kent and Medway CFS/ME Service, Neuropsychology Medway Admin Hub, Disablement Services Centre, Medway Maritime Hospital, Gillingham, Kent ME7 5NY. Tele: 01634 833937.
“The emphasis of our service is on self-management and rehabilitation and draws on principles of cognitive behavioural therapy (CBT) and graded activity.”
“Treatment is a collaborative process and the focus is always based on your needs and capabilities. The treatment programme aims to help you build on your problem solving techniques so you can discover the most useful ways to manage and overcome your illness.”

Leeds and West Yorkshire
The Leeds and West Yorkshire CFS / ME Service is based in the Therapy Suite on the first floor of the Newsam Centre and can be contacted on 0113 85 56330 / 0113 85 56331 / 0113 85 56334 or by email: cfsme.lypft@nhs.net.
“Our individual treatment plans and different options for treatment help people make sense of their condition and work towards recovery.”
The aims of our service are to:
– improve your quality of life – people say we are giving them their lives back
– help you on a journey towards recovery
– help you to continue in education and work if this is important to you
– help you understand your condition
– involve and support your carers, family and friends too.
Our service operates Monday to Friday, 8.30am to 4.30pm.”

Leicestershire and Rutland
Referrals are currently being directed to the Brandon Unit at Leicester General Hospital, where the clinical lead is Dr Trevor Friedman, a liaison psychiatrist: Brandon Unit, Gwendolen Road, Leicester LE5 4PW, tel: 0116 225 6193 (As at December 2012, we are informed that it was agreed that patients with M.E. were to be dealt with via neurology at the Leicester Royal Infirmary but that there are no current services available there. We suggest that patients discuss the services available with the local support group in the area – click on this link to find our local support group contacts page.)

Lincolnshire
CFS/ME serviceWard 14a, Grantham Hospital, 101 Manthorpe Road, Grantham, Lincolnshire,  NG31 8DG. Tel: 0303 123 4000 Fax: 01476 464889 Email: lpn-tr.LincsCFS-MEService@nhs.net
“The service aims to provide specialist assessment, rehabilitation interventions, and management advice from a range of disciplines. The service also aims to provide expert advice, education and support to health professionals, statutory and non-statutory organisations, service users and carers.”
“The CFS/ME service is a small, multidisciplinary team consisting of a consultant clinical psychologist, a specialist occupational therapist, a senior rehabilitation assistant, a specialist physiotherapist and an assistant psychologist. Our administrative base is Grantham and District Hospital, but clinical staff are community based covering Lincolnshire.”

Liverpool
The Liverpool CFS/ME Therapy Service, Ward 10, Alexandra Wing, Broadgreen Hospital L14 3LB, part of the Royal Liverpool and Broadgreen University Hospitals Trust. Tel: 0151 282 6185.
Manager: Colette Foster
Enquiries and referrals should be made to the therapy service. We operate a referral form system, available at the trust website, which is reviewed by one of the medical team at a multi-disciplinary triage meeting. The medical team are led by Dr Mike Beadsworth, consultant physician based at the Tropical and Infectious Disease Unit, Royal Liverpool Hospital.
We take referrals from the north west region.

Manchester
The Chronic Fatigue Programme, Silk House, Holyoak Street, Newton Heath, Manchester M40 1HA
Tel: 0161 219 9420 Fax: 0161 219 9477 Opening hours: Monday to Thursday 9am – 4pm with answerphone available when the office is closed. Clinical lead: Gill Walsh. Team comprises a nurse and a physiotherapist.
“The Chronic Fatigue Programme is a community service for adults living in Manchester who have a chronic/long term health conditions where chronic fatigue and/or chronic pain are the primary problems.”
“The service offers a pain course and a mindfulness course for chronic conditions, aiming to empower people to increase their self-management of pain and fatigue, reduce the day to day impact of their long-term condition on their daily life and work towards improving independence and increasing physical activity.”

Norfolk and Suffolk
GP referrals to ME/CFS Service, Herbert Matthes Block, Northgate Hospital, Northgate Street, Great Yarmouth, Norfolk NR30 1BU. Tel: 01493 809 977 Fax: 01493 809970. Senior Occupational Therapist: Jo Wiggins.
Clinics at: Kirkley Mill Healthcare Centre, Lowestoft; Nelson Medical Centre, Great Yarmouth; Bowthorpe Medical Practice, Norwich; Patrick Stead Hospital, Halesworth; Stow Lodge, Stowmarket; St James Medical Practice, Kings Lynn.
“We offer an outpatient service throughout Norfolk and Suffolk, providing assessment, diagnosis, management, advice, education and support for people who have a diagnosis of CFS/ME.”
“The team comprises of GP’s with specialist interest (GPwSI) and knowledge of CFS/ME and Specialist Occupational Therapists (OT) and physiotherapists (PT) who are supported by administrative staff. This is via face to face appointments, email and telephone. In a small number of cases, home visits.”

North Yorkshire (excluding Harrogate)
Yorkshire Fatigue Clinic, York Eco Business Centre, Amy Johnson Way, Clifton Moor, York YO30 4AG
Telephone 01904 479922 E:mail: sue@yorkshirefatigueclinic.co.uk Clinical Lead: Dr Sue Pemberton, Occupational Therapist. Other team members: Joe Bradley and Kelly Morgan, Occupational Therapists.
“We are the contracted provider for NHS assessment and rehabilitation for patients with CFS/ME in North Yorkshire, excluding adults in the Harrogate and rural area.”
Further information for patients, here.

Nottinghamshire
Nottingham CFS/ME Service, Mobility Centre, Hucknall Road, Nottingham. Tele: 0115 993 6628 (8.30am – 4.30pm Mon – Fri).
“The Nottinghamshire adult chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) team is based in the Mobility Centre at the City Hospital.”
“It aims to help patients with mild to moderate CFS/ME to develop appropriate ways of managing their symptoms and improve their quality of life.”
“Patients are offered either individual sessions or a place on an eight-week community-based group programme. Groups for up to 10 patients and their key workers run on Tuesday or Thursday mornings.”

Nuneaton, Warwickshire
George Eliot Hospital, College Road, Nuneaton, Warwickshire, CV10 7DJ.
Tel: 024 7686 5212
ME/CFS service clinic days, Friday afternoons. Waiting time for initial appointment, 13 weeks. Lead clinician, Dr Vinod Patel, with multi-disciplinary team comprising occupational therapist, physiotherapist, nurse and psychologist. Dr Patel is a consultant physician in diabetes and endocrinology and Reader in Clinical Skills at Warwick Medical School. To read an interview with Dr Patel conducted in 2010 for the ‘ME Positive’ online newsletter, click HERE.

Oxfordshire
Oxfordshire CFS/ME Service, Windrush House, Windrush Industrial Estate, Witney, Oxfordshire OX29 7DX. Tel: :01865 903 757 Fax: 01865 337 540 Email:
cfs@oxfordhealth.nhs.uk
 Office hours: Mon-Wed 9am-1.45pm, Thurs 9am-1.30pm.
Team members: Dawn Roberts, interim manager based at the Orchard Health Centre in Banbury; Hilly Quigley and Rachael Rogers, Specialist Occupational Therapists; Glenwys Wormald, Specialist Physiotherapist; Dr. Jean Bailey, GP with special interest in CFS/ME. Referrals should be made through GPs.

Oxford University Hospitals Fatigue Service, Churchill Hospital, Old Road, Headington, Oxford OX3 7LE. Tel: 01865 225218
Members of the team: Dr Daniel Zahl, clinical psychologist; Dr Charlie Winward, clinical specialist physiotherapist. The therapists offer NICE (National Institute for Health and Clinical Excellence) recommended treatment for ME/CFS. These are Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). These treatments focus on helping you to develop the tools to overcome your difficulties.

Peterborough and Cambridgeshire
Botolph Bridge Community Health Centre, Sugar Way, Woodston, Peterborough PE2 9QB Tel: 01733 774 583 Fax: 01733 774 514. Email: cpm-tr.CFSME@nhs.net
The Cambridgeshire and Peterborough ME/CFS Team, based in Peterborough, comprises a Specialist Nurse Practitioner and three Specialist Occupational Therapists. We offer diagnosis of ME/CFS and support in management for adults aged 17+ affected by, or suspected of having ME/CFS.
We must have a referral by a GP due to a requirement for exclusionary test results. While the team is based in Peterborough, the therapists do offer follow-up appointments at two other locations in the county.

Salford
ME/CFS Service,Salford Royal NHS Foundation Trust, Stott Lane, Salford M6 8HD. Tel: 0161 206 5153. Clinical lead: Dr Annice Mukherjee, consultant endocrinologist.

Sheffield (South Yorkshire and North Derbyshire)
Michael Carlisle Centre, Lyndhurst Road, Sheffield S11 9BJ
Service manager and lead occupational therapist: Anne Nichol. Tel: 0114 226 3232 Fax: 0114 354 0124 Email: sheffieldcfsmeservice@nhs.net
“This is a specialist therapy service for people affected by ME/CFS across South Yorkshire and North Derbyshire. The catchment area covers Sheffield, Rotherham, Doncaster, Barnsley, North Derbyshire County and Hardwick Clinical Commissioning Groups. The service includes two teams – one for adults and one for children and young people.”
“The service is available to individuals who have a provisional diagnosis of CFS/ME, are registered with a GP within the region, and who have been unable to self-manage their condition with the advice and management provided from primary care. ME/CFS can be a long-term and relapsing condition. Emphasis is placed on early diagnosis and intervention to prevent the development of more severe, complex and long standing problems.”
“Referral guidance and summary information can be found by searching for CFS and/or ME at www.sheffieldccgportal.co.uk

Shropshire
Community Neuro Rehabilitation Team, Shropshire Rehabilitation Centre, Lancaster Road, Harlescott, Shrewsbury SY1 3NJ.
Email for General Inquiries: cnrt@shropcom.nhs.uk
We have Occupational Therapists, Physiotherapists, Psychologists, Speech and Language Therapists, Rehab Assistants and a Dietitian. The named contact for the team is Dr Emma Lawrence (consultant clinical neuropsychologist and acting manager of the Community Neuro Rehabilitation Team), tel: 01743 453 600.

Somerset
Based at Priory House, Priory Health Park, Glastonbury Road, Wells BA5 1XL. Contact Karen Butt, tel: 01749 836703, fax: 01749 836543. Email: CFSME@somerset.nhs.uk
This service is provided by a small team based in Wells and uses strategies endorsed in the NICE Clinical Guideline for ME/CFS. The service offers assessment and treatment based on activity management which includes pacing setting baselines and relaxation. Following assessment we offer up to four individual appointments with a practitioner held in Wells or a group programme of six sessions which are held in a number of venues across the county including Bridgwater, Taunton and Yeovil. Telephone appointments and e-mail contact are also available. A number of additional sessions covering particular topics such as memory and concentration, are also provided and a conference is held each year. The Service is open to adults aged 18 and over and a transition clinic is available for young adults currently treated by the Paediatric Service and needing to transfer to the Adult Service. Referrals are made by a general practitioner (GP) and once accepted by our specialist doctor, appointments are usually offered within 10 weeks. The Service operates on Tuesdays, Wednesdays and Fridays each week.

South West London and Surrey (Sutton)
Tel: 0208 296 4152 (Clinical lead: Dr Amolak Bansal)

South Derbyshire
Tel: 01332 786657

Staffordshire
Tel: 01543 576609  Fax: 01543 576608 (Correspondence to M. Wong)
The ME/CFS service is provided within the Department of Psychology (Physical Health Psychology and Rehabilitation), Cannock Chase Hospital, Brunswick Road, Cannock WS11 5XY

Stockport, Tameside and Glossop
Stockport CFS/ME Service, 2nd Floor Woodley Health Centre, Hyde Road, Woodley, Stockport, SK6 1ND. Tel: 0161 835 6684 Email: snt-tr.mecfs@nhs.net
“The Stockport CFS/ME Service is an NHS service, offering CFS/ME management and treatment to people registered with GPs in the Stockport and Tameside & Glossop localities.”
“Referral is via a Stockport or Tameside and Glossop GP or NHS Consultant, no self-referrals; however phone enquiries directly to our service are encouraged.”
“We are a small multidisciplinary team offering home visit or clinical appointments dependent on the clients’ needs and severity of illness. Our team includes an administrator, CFS/ME specialist nurses, physiotherapists, occupational therapist and a cognitive behavioural therapist (CBT).”
“Our management approach includes pacing and activity management, relaxation techniques, managing stress, graded activity, guidance on sleep problems, managing setbacks, coping strategies and goal setting, and CBT. We work collaboratively with our clients to better manage the variety of symptoms associated with CFS/ME, and improve quality of live.”

Sussex-wide
Haywards Heath Health Centre, Heath Road, Haywards Heath, West Sussex RH16 3BB. To contact the administrator, Jenny Goldsmith, please phone 01444 475 799. Email: jenny.goldsmith@nhs.net
“The clinical lead doctor also runs clinics in Brighton. The service also offers group and individual treatments at out-patient clinics in Eastbourne. Referrals are accepted from GPs following completion of the service referral form including comprehensive blood-screening tests.”
“The majority of patients take part in the multi-disciplinary out-patient group self-management programme. The course covers topics such as rest and activity management, sleep management, graded exercise (activity) and lifestyle management within a cognitive behavioural framework. The group is reviewed after three months.”

Swindon and Wiltshire CFS/ME Service
Eldene Health Centre, Eldene, Swindon SN3 3RZ.
“This service has a GP with a special interest as the clinical lead. Others in the team – all with a special interest in ME/CFS – are a physiotherapist, an occupational therapist, a psychologist and a dietitian.”
“The service sees people 1:1 or in group sessions and offers a variety of techniques to help people with the illness manage their difficulties and improve their quality of life. Courses are held periodically through the year. Referral to the service is through GPs only.”

Tees Valley
The ME/CFS Team, Department of Infectious Diseases and Travel Medicine, James Cook University Hospital, South Tees Foundation NHS Trust, Marton Road, Middlesborough TS4 3BW, tel: 01642 835898.
“The team includes: Dr John Williams clinical lead/consultant physician, Dr Brendan McCarron consultant physician, Dr David R Chadwick consultant physician, Sister Amanda McGough specialist nurse, Dr Alison Woods senior clinical psychologist, Mrs Angela Park specialist physiotherapist. Referrals to the clinical psychologist and specialist physiotherapist can only be made by the CFS/ME team. There is no direct access to these services at present.”

Newcastle, North Tynside and Northumberland
Molineux Street NHS Centre, Newcastle upon Tyne, NE6 1SG. Tel: 0191 213 8823. Email: jeanette.welch@nuth.nhs.uk
Office hours 8.15am – 4.15pm, Wednesday and Thursday; 9.00am – 12.45pm Friday.
“The team working with CFS/ME patients in our area has a range of experience, and includes: consultants in immunology, and infectious and tropical medicine, clinical psychologists who carry out the initial psychological assessment, and work with patients whose condition has impacted on their physical and psychological well-being, cognitive behavioural therapists, and physiotherapists.”

South of Tyne Chronic Fatigue Syndrome Service
Chester Lodge Sunderland Royal Hospital Kayll Road Sunderland Tel: 0191 541 0045. The Head of the Psychology Service is Dr Tony Wells.
“Referrals to the South of Tyne Chronic Fatigue Syndrome Service are accepted from GPs located across the Gateshead, South Tyneside and Sunderland geographical areas.”
“The aim of this service is to provide assessment, enhanced condition management and symptomatic treatment, for people who have chronic fatigue syndrome (CFS).  We hope to assist in the prevention of longer term and more severe symptoms by providing early intervention.”

Wiltshire South
Tel: 01225 465941 (ext 202)
Castle Street Surgery, Salisbury SP1 3SP
Clinical leads: Katy McCarthy, specialist occupational therapist, and Dr Graham Jaggard, GP with a special interest.

Worcestershire
Chronic Fatigue Syndrome Service, Malvern Community Hospital, 185 Worcester Road, Malvern, Worcestershire WR14 1EX. Tel: 01684 612 671 This is a part-time service with admin hours as follows: Tues-Wed 8am-1pm, Thurs 8am-12noon. Email: WHCNHS.chronicfatigue@nhs.net
“We are a specialist part-time service that delivers support and treatment to people with CFS/ME within community settings across Worcestershire.”
“The main aspect of our treatment is our Managing Lifestyles Group programme.  This offers patients the opportunity to learn more about the ways in which they can manage their condition, with the aim of improving functional independence and quality of life.”
“The group teaches skills in sleep management, pacing, relaxation and mindfulness, and communication, as well as many further topics. We find that the majority of our patients benefit greatly from this programme and particularly find that meeting and building relationships with other group members helps to reduce the isolation that is so commonly felt as a result of the condition.”

 

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Part 3

Children and Adolescent NHS ME/CFS Specialist Services in England

Bath Paediatric ME/CFS Service
Children’s Centre, Royal United Hospital, Combe Park, Bath BA1 3NG. Tel: 01225 821 340
Team administrator; Heather Hill
The Bath paediatric ME/CFS service provides local, regional and national assessment and treatment for over 150 children and young people each year. It is now open to the ‘choose and book’ appointment system run by the NHS. This means that children or adolescents anywhere in the country should have access to their outpatient service for advice on either diagnosis or management through a GP referral.

Brighton and Hove
Paediatric CFS/ME Service for Brighton and Hove, Seaside View Child Development Centre, Brighton General Hospital, Elm Grove, Brighton BN2 3EW, tel: 01273 265 780 Email: SC-Tr.BGH-seasideview@nhs.net Team members: Dr Victoria Thornton (clinical psychologist), Julia Krikman (occupational therapist), Claire Neyland (team administrator). The team meets together only once a week on Wednesdays so it may take a few days to return phone calls.

Cambridgeshire and Peterborough
The Children’s Community Nursing Teams Nightingale Court, Ida Darwin Fulbourn Cambridge CB1 5EE Tel: 01223 884335 Fax: 01223 884299
The lead paediatrician is Dr David Vickers. This a small community team based at the Ida Darwin unit, Fulbourn, who provide a specialist service to children and young people up to the age of 19 years with CSF/ME, who are registered with a GP and attend school in Cambridgeshire and Peterborough.

Cornwall and the Isles of Scilly
Cornwall and Isles of Scilly CFS/ME Service, The Lighthouse, Royal Cornwall Hospitals Trust. Truro. TR1 3LJ 01872 252935.
New services for children and young people under 16 have been commissioned by Kernow Clincial Commissioning Group for patients registered with a GP in the county.

Cumbria (North)
Children’s Community Team, Cockermouth Cottage Hospital, Isel Road, Cockermouth, Cumbria CA13 9HT
Tel: 01900 324 131 Mob: 07789 925 705
Service lead: Laura Wilson, children and young people’s CFS/ME practitioner.

Devon
Tel: 01392 208614
Royal Devon and Exeter Hospital
Paediatrician: Dr James Hart, Occupational therapist: Helga Gore.

Dorset
CFS/ME Service for Children and Young People, Children’s Centre, Damers Road, Dorchester, DT1 2LB. Tel: 01305 253148  Email: dorset.cfs@dchft.nhs.uk
Assessment and treatment is available to all children living in Dorset with appointments offered locally.  Limited domiciliary visits are available if required for those unable to attend an out-patient appointment.

East and North Hertfordshire
East and North Hertfordshire NHS Trust Chronic Fatigue Syndrome Service for Children and Young People, Children and Adolescent Unit, Lister Hospital, Coreys Mill Lane, Stevenage, Hertfordshire, SG1 4AB. Tele: 01438 284235. Fax: 01438 284812. Email: cfspaeds.enh-tr@nhs.net
We are a Specialist Team comprising: Dr Deborah Gale, Specialist Clinical Psychologist; Janey Readman, Specialist Nurse; Lisa Ackerman, Specialist Physiotherapist.

Liverpool
CFS/ME Service Alder Hey Children’s Hospital, Eaton Road, Liverpool, L12 2AP
Tel: 0151 228 4811 (ext 3803)
“This is a general paediatrician led multidisciplinary team (MDT) including senior physiotherapist, CFS/ME specialist nurse, psychologist, consultant psychiatrist and a medical secretary. We provide both diagnostic and therapeutic services to children and young people with this condition coming from Liverpool, Knowsly and Sefton areas.”

Manchester
Harrington Building, Royal Manchester Children’s Hospital, Oxford Road, Manchester M13 9WL. Tele: 0161 701 4516 Email: cfs.me@cmft.nhs.uk
Coordinating clinician: Alexandra Woore.

London

Great Ormond Street Hospital
Tel: 0207 813 8541

University College Hospital
235 Euston Road London NW1 2BUU
Tel: 08451 555000
Consultants: Jo Begent and Terry Segal
The UCLH adolescent ME/CFS service provides local and tertiary assessment and treatment, as in and out patients between the ages of 13 to 19 years old. The service is delivered by a multidisciplinary team which includes nurse specialist, OT, physiotherapist, psychologist and doctors.

Nottinghamshire
Children’s Service, C Floor, South Block, Office 3086, Queens Medical Centre, Nottingham NG7 2HU
Tel: 0115 924 9924 (ext 66282)
Clinical co-ordinator and Specialist Occupational Therapist at the Nottingham Children’s Hospital: Jacqui McIntyre, email: Jacqui.McIntyre@nuh.nhs.uk
Working days – Monday to Thursday. Referrals must be made by a consultant paediatrician.

South Yorkshire and North Derbyshire
See Sheffield entry in ‘Adult Services’.

North of Tyne
Dr Caroline Grayson, Community paediatrician, Newcastle Hospitals NHS Trust, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne NE1 4LP, Telephone: 0191 282 5517, Email: gavin.spickett@nuth.nhs.uk

South of Tyne and Wear
Department of Paediatrics, City Hospitals Sunderland NHS Foundation Trust, Kayll Road, Sunderland SR4 7TP, Tel: 0191 5656256 ext: 42899 Fax: 0191 5699219 Email: neil.hopper@chsft.nhs.uk
Clinical lead: Dr Neil Hopper, consultant paediatrician. We see which sees children and young people up to the age of 18 with CFS. We cover Sunderland, South Tyneside and Gateshead and comprise two paediatricians, one paediatric physio and one psychologist.

 

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Part 4

NHS ME/CFS Specialist services in Scotland

We want to build up a picture of specialist NHS services for adults and children with ME in Scotland. If you know of any good services, please let us know. If you have any tried any services, your feedback will be most welcome. Email here.
We’ll publish the detail as it comes in.

Astley Ainslie Hospital
Department of Clinical Psychology, Astley Ainslie Hospital, 133 Grange Loan, Edinburgh EH9 2HL. Open only on Thursdays and Fridays. Tel: 0131 537 9139.
This is a Lothian-wide service for patients with a diagnosis of ME/CFS, who are well enough to attend the service. The service was set up as a two-year pilot starting in November 2012 but has since been granted a year’s extension to run until the end of November 2015. It is based in the hospital’s pain management service and is run by specialist physiotherapy and applied psychology staff.

Glasgow
NHS Centre for Integrative Care, 1053 Great Western Road, Glasgow G12 0XQ, Tel: 0141 211 1600. Clinical lead: Dr David Reilly.

Fife
Scotland’s only specialist nurse-led service for patients with ME/CFS is at the LadyBank Clinic, Commercial Road, Ladybank, Fife KY15 7JS, tel: 01337 832 123, email: keithanderson1@nhs.net It is run by Keith Anderson, a qualified psychotherapist and CBT therapist. Mr Anderson recently gave a talk to Edinburgh ME Self Help Group; to download a short report of this talk, please click HERE.

Stornaway, Western Isles
A Fatigue Management Programme was opened in May 2011 at the Western Isles Hospital in Stornoway to help people with fatigue to explore the reasons for the fatigue and equip them with the techniques to manage the problem better. A video link to Uist and Barra Hospital may be set up, if there is a demand for it. The Western Isles, with a population of about 26,000 people, has no specialist ME/CFS service. To inquire about joining the programme, please contact Elaine Smith, Occupational Therapy Department, tel: 01851 708287, or email elaine.smith1@nhs.net who will send you an application form.

NHS SPECIALIST SERVICES IN WALES
We are building up a picture of specialist NHS services for adults and children with M.E. in Wales. If you know of any services, please let us know. If you have any tried any services, your feedback will be most welcome.

North Wales ME/CFS Service
The Quay Clinic, Fron Road, Connah’s Quay, Deeside CH5 4PJ. Callers to the building should press the option for ‘Bloods/Reception’ and ask for the ME/CFS Clinic. Tel: 01244 813 486 Fax: 01244 830883 (This service takes referrals from the east of North Wales. Staff: Simon Neal, clinical psychologist; Penny Cowley, head of dietetics; Chris Watson, superintendent physiotherapist).

CFS/ME Service (North Wales)
CFS/ME Service, Betsi Cadwaladr University Health Board, Cartref, Cartref, Ysbyty Bryn y Neuadd, Conwy, LL33 0HH
Tel: 01248 682 843 (Clinic answerphone 01248 682 874)
Clinical lead: Dr Helen Lyon Jones, consultant clinical psychologist.

Royal Gwent Hospital in Newport
Dr Meirion Llewellyn sees some ME/CFS patients. Tel: 01633 234234

Pain and Fatigue Management Centre
Bronllys Hospital, Brecon, Powys LD3 0LU.
For referrals or more information, contact Margaret Davies, the office manager, tel:  01874 712 499.

 

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Part 5:

NHS ME/CFS Specialist Services in Northern Ireland

The care pathways for people with ME/CFS in Northern Ireland are not well established and there is no specialist service for people with ME/CFS in the Province.

Thanks to Mrs Antoinette Christie, from ME Support in Northern Ireland, who has made available part of the text of a letter she has received in response to inquiries made to both the Minister of Health and the Assembly’s Health Committee:

“There has never been a Commissioned service for CFS/ME in the Belfast Health and social care trust. Dr Welby Henry, a consultant physician provided a CFS/ME clinic in Belfast City Hospital since at least 1986 on a special interest basis. Dr Henry has now retired.

The Belfast Trust and the health and social care board are currently discussing how best to accommodate the gap in services following Dr Henry’s retirement.”

Mrs Joan McParland, of Hope4MEandFibro Northern Ireland, wrote on 20 November 2016:

“A Condition Management Programme for ME/CFS has been operating in the Northern Trust for a number of years. We met with the staff a few months ago and they confirmed they are offering self-management advice only, not GET as was previously thought. GPs can refer patients in Northern Trust catchment area.”

 


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If you have found this information helpful, then please donate – whatever you can afford – to help us continue with our work to make the UK a better place for people with M.E. Just click the button below to visit our JustGiving page:

Or why not join the ME Association as a member and become a part of our growing community? For a monthly (or annual) payment you will not only be helping to keep us doing what we do best, but will receive our exclusive ME Essential magazine.

 


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15 thoughts on “NHS ME/CFS Specialist Services

  1. Re: Adult services in Cambridgeshire and Peterborough.
    Please can you expand on “… we understand efforts are being made to open another clinic in the Cambridge area.”
    I was finally diagnosed a few years ago by Addenbrookes Infectious Diseases Department, who offered CBT and sent me home with no further support. My GP is very supportive, but has no specialist knowledge of ME. I’m surprised that a teaching hospital of Addenbrookes’ standing, with their links with MRC don’t offer anything more specific than this.

    • Helena

      I’m the person who compiles our list of NHS specialist services. I wrote the Cambridge and Peterborough entry some years ago so I’m the first to concede that the statement you query is now probably out of date. I’ll be in touch with the service in the next few days with a view to updating our entry.

      If your GP would like to be sent a copy of our 52-page clinical guidance booklet (which also covers developments in research), please email our office at admin@meassociation.org.uk and let them have your GP’s full name and surgery address. They will take it from there. Please put ‘Purple booklet’ in the subject line of the email – it’s the name by which the booklet is commonly known.

      • I can confirm that the nearest service is based at Peterborough – I too received a diagnosis of CFS/ME from the same department in August 2014, discharged back into the care of my GP with a referal to the Peterborough clinic (3 month+ waiting list).

  2. Fairlawns on the list, I’m having telephone appointments the occupational therapists have put me on graduated exercise therapy it as made me worse why do the do this when they must know its dangerous, this part of the treatment has to be removed my brother who also has ME was treated at fairlawns he also was made worse because of GET its a neurological illness but they treat it as if its phycological. Why put them on your list when the treatment does not work.

  3. Does anyone have experience of Bryn y Neuadd’s services. Initial assessment was quite poor – dismissive and I got the distinct impression the assessor wasn’t listening. She repeated back what was said and it was wrong!! Help

  4. hi Claire, I was seen at Llanfairfechan couple of years ago and was assessed by a nice male doctor and a lady psychologist, who was very confused by my questionnaire! The doctor seemed very on the ball. (I can’t remember his name without finding the letter). I didn’t find him dismissive at all.

  5. What I take away from seeing this long list of psychologists, occupational therapists, references to “Fatigue”, GET and CBT is this: it’s like providing diabetes clinics with no mention of insulin, or cancer services with no chemotherapy.

  6. I had already been discharged from James Cook CFS Clinic, in the N East after one hour talking to the nurse, who wanted me to take antidepressants that I didn’t need. The excuse there was no more funding from my Trust and it was Leeds or nothing.

    I asked my GP a few years later, specifically to refer me to a Neurologist in Newcastle and was referred after my young new GP went to the exceptions panel, as it is out of my area. Due to my GP ignoring the physical symptoms, (of stroke) and adding that the ‘Non Existent’ psychological symptoms should be concentrated on (in her referral letter), the Neurologist did send me for usual tests. As always they were negative, so she sent me to the CFS clinic, run by Dr Spickett.

    (I had a TIA (mini stroke) not much longer after that.

    Newcastle was an easier journey and I know Newcastle City quite well. Dr Spickett was very helpful, with some excellent letters and suggested I attend the CFS Clinic nearer to home ‘if I wished to do so’.

    As all the clinics offer the same disgraceful, harmful therapies, my decision was easy. NO!

    My Pain Consultant was very helpful and after attending a Pain Management group session, which gave a good explanation of how pain affects the body and brain good I had a few appointments with their Physiotherapist.

    Due to the journey I travelled, (still miles away) I was given the opportunity to take home a self-help book from the physiotherapist. it was my choice to take it home or attend the physiotherapy clinic. each week. I chose to try at home and found the relaxation CD very helpful to relieve stress and sleep better.

    Exercise was not mentioned, but PACING was. This I try but we know how energetic we all used to be and still I find that difficult. I’m still trying ten years later!

    Even now I would not recommend anything to do with CBT or especially GET. We know ME is Neurological and physical symptoms should be dealt with by an APPROPRIATE Specialist Team.

    I’ve found knowing my own symptoms and keeping up with my records, noting what works for me and asking my doctors to make sure all concerns are being covered the best way to look after my health. I take my list of questions, to engage with my doctors, keep all my diaries, notes of what they have told me and read the guides from MEA and the forums.

    After some time, our own instincts tell us what works, but keep seeing good doctors and they will help you along the way. It is not always their fault and need our help as much as we need them.

    Best wishes

  7. Re Norfolk clinics.
    Awful, pointless. The original Dr seemed ok but the course and OT that dealt with me was awful! Dour, miserable staff with no understanding and all they offer is watching mindfulness videos on Youtube as I was already on the medication they offer (and had been on the other previously).
    Travelling there wore me out for no help.
    They could really just email the patients.

  8. I was diagnosed with CFS three years ago. I was referred to the Ashlie Ainslie clinic in Edinburgh, but after three visits, decided that the psychologist I saw was probably in need of a psychologist as he appeared to have anger management issues. The treatment offered was basic, CBT techniques and a cd of calming music….. This negative experience affected me profoundly and I have not sought any further treatment since. Thus, nearly four years down the line and I have lost all hope of ever reclaiming my life.

  9. Anthony Evans-Donnelly

    It is quite disturbing that the clinics listed are all phychology or psychiatrist led. Mindful of the data now released of PACE regarding graded exercise therapy, it seems ironic all these clinics are offering are mindfulness CDs and psychological therapy. ME is a real illness not mental or psychological. Hoping the NICE guidelines change soon so we can kick this into touch.
    We need more neurologists, rheumatologist, immunologists etc to treat a physical illness.
    Not having a moan at the MEA it’s the NICE guidelines that direct the NHS on how they treat or ‘cure’ ME.