World Patient Safety Day letter

An open letter to Wes Streeting from over 200 healthcare workers

Today, for World Patient Safety Day, 202 healthcare workers are sending a letter to Wes Streeting to raise concerns about the safety of ME patients within the NHS and with a call for urgent action.

Last month, over 2,600 patients and carers wrote to Wes Streeting and we recently received a disappointing response. Now healthcare workers are joining the call to action.

Today’s open letter is a collaboration between #ThereForME and Dr. Binita Kane, who recently spoke about gaps in care for ME on the BBC Breakfast sofa. We’re publishing the full letter and signatures below.

To support the World Patient Safety Day call to action, we’re encouraging people to post on social media today, using the hashtags #ThereForME and #WorldPatientSafetyDay and tagging Wes Streeting/DHSC. If you can - we’d love people to post between 4-5pm (UK time) today for maximum impact. There’s much more guidance for posting here.

A big thanks in advance - and we’ll see you for the Twitter/X/Insta storm!

Edited to add (23 September): Due to popular demand we spent a few more days collecting signatures from healthcare workers who saw the letter and wanted to add their names. An additional 78 names have now been added to the list, bringing the total to 280.

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Dear Secretary of State,

We write to you on World Patient Safety Day to express our concerns about the safety of patients with Myalgic Encephalomyelitis (ME) within the NHS.

In August over 2,600 patients and carers affected by ME and Long Covid wrote to you, sharing recommendations from the #ThereForME campaign. The Department of Health and Social Care has thus far declined to meet with the campaign. On World Patient Safety Day, we – as healthcare workers – call on you to listen to their voices and take immediate action.

The theme for this year’s World Patient Safety Day is ‘Improving diagnosis for patient safety’, using the slogan ‘Get it right, make it safe’. Devastatingly, for patients with ME this simply is not true. There is little access to truly specialist ME care or treatment within the NHS and paradoxically, the sicker a patient is, the less care they receive. 

The number of people affected by ME has grown vastly since the start of the pandemic. Although the data is difficult to disentangle, by some estimates as many as half of patients with Long Covid could meet the diagnostic criteria for ME and face the same gaps in NHS care. Even if doctors and healthcare professionals are knowledgeable and willing to treat patients, the infrastructure to provide safe and appropriate care does not exist.

Like all patients, people with ME deserve safe care within the NHS. 

Patients at the severe end of the disease spectrum are bedridden, sometimes tube-fed and confined to quiet, darkened rooms due to extreme light and sound sensitivity. Hospital appointments or admissions often become impossible or make the condition worse. In the most extreme cases, patients languish behind closed doors with little or no support. Some – including high-profile cases in the media – have even starved to death. 

This is a state of affairs barely conceivable in the UK in 2024.

The new cross-government delivery plan is a welcome opportunity to put patient safety at the heart of NHS care – but it will be months before the plan is published and perhaps years before it is implemented. Urgent action is needed today. 

On World Patient Safety Day we call on you to:

• Acknowledge, from the very top of government, that gaps in NHS services for ME are resulting in serious patient safety concerns, and commit to taking action.

• Work with us to immediately convene an ME Clinical Taskforce to provide emergency specialist guidance in cases where patients are hospitalised, and drive forwards improvements in NHS treatment and care (including managing risks of malnutrition).

• Commit that this government will hold NHS Trusts and Integrated Care Boards accountable for implementing guidance from NICE on diagnosing and managing ME (NG206), recognising that a failure to do so risks unsafe care.

Doing nothing is not safe. We urge you to take action now. 

Your sincerely,

Dr Binita Kane - Consultant Respiratory Physician, special interest in ME/ Long COVID, Manchester

Professor Carolyn Chew-Graham OBE - GP Principal and Professor of General Practice Research, Manchester

Dr Anna Porter - NHS GP, North Central London

Dr David Shakespeare - Consultant in Neurological Rehabilitation Medicine, Lancashire, Royal Preston Hospital

Dr Deepak Ravindran - Consultant NHS Pain Medicine, specialist interest in Long COVID, Berkshire

Dr Hollie Francis - GP Partner, Greater Manchester

Professor Amitava Banerjee -  Consultant Cardiologist and Professor of Clinical Data Science, London

Dr Michelle Moore - GP Partner, Greater Manchester

Dr Cilla Rosen - GP with extended role in Long Covid, Hampshire

Professor Melvin Lobo - Cardiovascular Physician, Specialist in hypertension and PoTs, London, London Bridge Hospital

Dr Melissa Sargaison - Specialist Physician, Clinical Lead ME/CFS & Fibromyalgia Service, London, Royal London Hospital for Integrated Medicine

Dr Sarah Mason-Whitfield- GP, special interest in Emergency Medicine, London

Dr Helen Miles - GP, Oxfordshire

Professor Sarah Tyson - Physiotherapist and Honorary Professor of Rehabilitation, Manchester

Dr Asad Khan - Consultant Respiratory Physician, Manchester

Dr Ben Marsh - Consultant Neurodisability Paediatrician (retired), Exeter

Dr Abbas Khushnood - Consultant Paediatric Cardiologist, special interest in Long COVID, Newcastle

Dr Rebecca Goody - Consultant Clinical Oncologist, Leeds

Robin McNelis - Clinical Physiotherapist, special interest in Long COVID, Epping Forest

Dr Ben Sinclair - GP and Long Covid Doctor, London

Dr Clare Rayner - Consultant Physician in Occupational Medicine, Society of Occupational Medicine Long Term Illnesses Taskforce, Greater Manchester

Dr William Weir - Consultant in Infectious Disease, special interest in ME, London

Dr Claire Taylor - GP, special interest in Long Covid/ME, Perth, Scotland

Dr Rebekah Holmes - GP, Manchester, Northenden Group Practice

Dr Helen Salisbury - GP, Oxford

Sheryl Randhawa - Registered Nurse. Community Mental Health Nurse, London, Mother/Carer of Hannah who died of severe ME in 2022

Michael Lauchlan - Emergency Care Assistant, East Midlands

Amy Urry - Family and Systemic Psychotherapist, Exeter

Dr Rebecca Williams - GP Registrar with specialist interest in Paediatrics, training on hold due to ill health, West Yorkshire

Dr Rebecca Hall - GP, special interest in ME/Long Covid, Somerset

Dr Linn Järte - Specialist Registrar in anaesthetics, Wales

Julie Taylor - Nurse, special interest in Long Covid, Hull

Angela Tillen - Clinical Phlebotomist, supporting care of community patients with ME, Derby

Edd Tillen - Clinical Phlebotomist, supporting care of community patients with ME, Derby

Dr Clarke Gostelow - Junior Doctor

Dr Nicola Clague-Baker - Physiotherapist and Lecturer with special interest in ME, Liverpool, University of Liverpool, Physios For ME

Dr Michelle Bull - Physiotherapist, special interest in ME, Surrey, Physios For ME

Karen Leslie - Physiotherapist, special interest in ME, Merseyside, Physios For ME

Dr Charles Shepherd - Honorary Medical Advisor to ME Association

Dr Yasmin Levene - Histopathologist, London

Claire Appleton - Paramedic, Harrogate

Dr Eleanor Balmer - Consultant Paediatrician, Manchester

Carla Golding - Registered Nurse and Clinical Governance Advisor, Staffordshire

Aileen Mulligan - Registered Nurse, Belfast

Rachel Potter - Staff Nurse

Mandy Jones - Midwife, East Cheshire

Lorraine Horobin - Registered Nurse, Corporate Clinical Governance Facilitator, Staffordshire

Dr Nigel Speight - Paediatrician, special interest in ME, Durham

Dr Mark Fabrowski - NHS GP, Sussex, Medical Advisor to Long Covid Foundation

Dr Robin Kerr - GP, Scotland, Action For ME

Dr Katherine Wildon - GP, North West

Dr Joanne Murray - Consultant Clinical Psychologist, Manchester

Sarah Benjamins - Nutritionist, Manchester

Claire Sehinson - Functional Medicine Practitioner, Surrey

Amanda Dench - Paediatric Diabetes Nurse Specialist, East England, East of England Trust

Dr Stephanie de Giorgio - GP, East Kent

Mihai Mihai - Registered Nurse, Exetter

Dr Rageshri Dhairyawan - Consultant in Sexual Health, London

Dr Moira Phillips - Consultant Clinical Psychologist, Glasgow

Matthew Strang - Orthopaedic Surgeon, Bristol

Dr Kate Christie - GP, Surrey

Dr Emma Rivers - GP, Wetherby

Dr Azima Hussain - GP West Yorkshire

Dr Sakander Mahmud - Functional Disability Assessor (DWP), former GP registrar, West Yorkshire

Dr Alexis Gilber - Consultant in Health Protection, Leeds, UKHSA

Dr Sherena Nair - Consultant Elderly Medicine, Leeds, Leeds Teaching Hospitals NHS Trust

Dr Laura Graystone - GP Registrar, North Yorkshire

Dr Pia-Sophie Wool - GP, special interest in Paediatrics, Worcestershire

Dr Rachel Duncan - GP, special interest in Dementia, Sussex

Dr Johanna Theron - Clinical Lead Long Covid, Kent, Kent and Medway ICB

Kerry Davies - Registered Nurse, Cumbria

Dr Susie Harris - Emergency Care Registrar, Wirral

Dr Paul Smith - Consultant Physician, Lancaster

Dr Fayyaz Chaudhri - Community Dermatologist, North Cumbria

Dr Clare McNulty - Consultant Anaesthetist, Scotland

Sharon Garton - Registered Nurse, Derby, University Hospitals of Derby and Burton NHS Foundation Trust

Angela Marsden - Advanced Nurse Practitioner, East Sussex, Supporting Healthcare Heroes

Dr Alison Twycross - Nursing Professor and Deputy Dean (retired), Honorary Associate, Professor, Aylesbury, Supporting Healthcare Heroes, University of Birmingham

Dr Vikki McKeever - GP, special interest in ME/CFS, Leeds and York

Dr Elke Hausmann - GP, Derby

Amy Warbuton - Advanced Clinical Practitioner for Diabetes and Endocrinology, Lancaster, Royal Lancaster Infirmary

Dr Badia Ahmed - Histopathology Speciality Trainee Doctor, London

Dr Sheena Rakhra - GP, London

Gill Armstrong - Nurse Manager (retired), London

Professor Lesley Kavi - GP (retired), Visiting Professor, Warwickshire, Trustee and Chairperson of PoTs UK

Dr Rachel Reaveley - Rehabilitation Consultant, North East

Dr Anam Ahmed - GP and LTFT Obs and Gyne speciality training registrar, South Yorkshire

Dr Clare Rollason - GP, Urgent Care, Lancaster

Dr Andrew Blease - GP, East Kent

Sophie Lewthwaite - Registered Nurse, Cumbria

Deborah Singleton - Nurse specialist Long Covid, Cumbria

Dr Yasmin Razak -NHS GP & Educator, London, Golborne Medical Centre

Dr Hannah Georgious - GP, Cheshire

Dr Paulette Ah-Chung - GP (Retired), Essex

Dr Gemma Banham - Consultant Renal Medicine and General Internal Medicine, West Midlands

Dr Nina Muirhead - Consultant Dermatologist, London

Dr Sarah Glynne - GP and Menopause Specialist, London, The Portland Hospital

Dr Paul Glynne - Consultant Physician, special interest in Long COVID, London, ULCH

Dr Ian Barros D'Sa - Consultant Radiologist, Birmingham

Dr Shaun Qureshi - Palliative Medicine Physician, Oxford

Dr Helen Smith - GP, Bedfordshire

Patricia Temple - Staff Nurse NHS

Dr Gareth Price - GP Partner, West Yorkshire

Dr Adelaide Lippold - GP, North Yorkshire

Clare Westwood - Advanced Nurse Practitioner, West Yorkshire, Huddersfield Royal Infirmary

Katie Wade - Advanced Clinical Practitioner, Paediatrics, West Yorkshire, Calderdale Royal Hospital

Leanne Spender - Midwife, North Yorkshire, Harrogate Royal Hospital

Dr Natalie Winfield - GP, Leeds

Ellen Dedus - Children's Community Nurse, West Suffolk, West Suffolk Foundation Trust

Kate MacDougall - Physiotherapist, Bedford

Sally Jennings - Palliative Care Physiotherapist (Retired), Leicester

Dr Timothy Jennings - GP (Retired), Leicestershire

Dr Julia Ward - GP, Dundee

Dr Eleanor Drager - Consultant in Genitourinary Medicine, London

Dr Cara Strachan - GP Locum, East Lothian

Dr Salina Jain-Parmar - GP, North Leeds

Dr Julie McDonald - Consultant Anaesthetist, Aberdeen, Aberdeen Royal Infirmary

Dr Calum McDonald - Consultant Anaesthetist, Aberdeen, Aberdeen Royal Infirmary

Dr Chia Liang - Consultant Geriatrician, London

Dr Rachel Ali - GP, Plymouth

Dr Sara Thompson - GP, Hertfordshire

Dr Amy Small - GP, Sheffield

Dr Catherine Steven - GP Partner, North London

Dr Lakhveer Manku - Consultant Physician, Manchester, Northern Care Alliance

Dr Mary-Ann Bentham - Consultant Paediatric Anaesthetist (Locum), Manchester, Manchester Children's Hospital

Dr Susannah Thompson - GP, North East

Dr Kul Bushan - Consultant Psychiatrist, London

Dr Anna Wylie - GP, Cambridgeshire

Dr Avril Washington - Consultant Paediatrician, London

Alice Martin - Midwife, Suffolk

Dr Angela Stevens-King - GP Partner, Cambridgeshire

Dr Aisha Sarwar - GP, Manchester

Karen Donaldson - Respiratory ACP, Lancashire

Anna Gregorowki - Consultant Nurse and BACME Chair, London, University College London Hospital

Dr Richard Tozer - Consultant Paediatrician and Local lead for ME/CFS, Devon

Dr Kelly Fearnley - Foundation Doctor, Bradford, Bradford Royal Infirmary

Maria Esslinger-Raven - Midwife, Lancashire

Dr Brian Holloway - Consultant Radiologist, London

Dr Wolfgang Water - GP, Bristol

Dr Sarah Jenkins - Consultant Neuroradiologist, Glasgow, NHS Greater Glasgow & Clyde

Dr Mary Zadik - GP, Greater Manchester

Dr Sarah Pocknell - GP (medically retired), London

Jonathon Dunn - Family and Systemic Psychotherapist, West Devon

Debora Tudge - Specialist Public Health Practitioner, Derbyshire

Emma Brown - Specialist Nurse, Cumbria, Dismissed from NHS on grounds of ill health, due to Long Covid

Professor Louise Cummings - Professor of Clinical Linguistics, York, St Johns University, UK

Rachel Jessey - Long Covid Nutritionist, Hampshire

Jessica Wainman-Lefley - Clinical Psychologist, Glasgow

Marina Townend - Specialist Occupational Therapist, Team Lead on ME/CFS and Post-Covid Syndrome services, Malvern Community Hospital

Dr Jonathan Fluxman -  GP (retired), London

Dr Rachael Fear - SPT4 Obstetrics and Gynaecology

Sue Luscombe - Registered Dietician, Bedfordshire, Honorary Dietary Adviser ME Association

May Nisbet - Midwife (retired), Scotland, Aryshire and Arran NHS Trust

Dr Sarah Gawthorpe - GP with Special Interest in Dermatology, Southampton

David Martin - Clinical Psychologist, Suffolk

Dr Helen Day - Consultant GP, Yeovil, Ryalls Park Medical Centre

Dr Joanna Kirkcaldy - GP, Devon

Dr Chantal Meystre - NHS Emeritus Palliative Medicine, West Midlands

Dr Sophie Carpinteiro - GP and Genito-urinary Medicine Speciality Doctor, Brighton

Dr Sarah Jordan - Consultant in Acute Medicine and Gastroenterology, Darlington

Dr Alice Poskett - Obstetrics and Gynaecology, West Midlands

Mrs Amy Pearson - Consultant ENT Surgeon, Hull

Dr Sarah Loveridge - Surgical registrar (retired), Essex

Dr Jennifer Gibb - FY2 Doctor, Severn Deanery

Dr Christopher Gibb - GP, North Devon

Dr Rebecca Steed - GP, Nottingham

Dr Francesca Farmer - GP, London

Dr Sammy Syed - GP, Manchester

Dr Sharon Taylor - Psychiatrist, London

Dr Kerry Smith - GP, Chichester

Dr Lindsay Wakeford - GP, Rugby

Dr Angela Wilkinson - Consultant Geriatrician, Fife

Dr Rachel Jones - NHS Consultant, London

Dr Davina Darmamin - Community Paediatrician, Cardiff, Cardiff & Vale University Health Board

Dr Julia Bodle - Consultant in Obstetrics and Gynaecology, Sheffield

Louise Lumb - Healthcare Assistant, Huddersfield, Huddersfield Royal Infirmary

Dr Clare Bolt - Former Consultant Psychiatrist, Hereford

Dr Laura Hobbs - GP, Hampshire

Dr Kaveri Jalundhwala - GP Registrar, Thames Valley

Dr Nathalie MacDermott - Consultant Paediatric Infectious Diseases, Cambridgeshire

Dr James Gill - GP, Assistant Professor Warwick Medical School, Warwickshire

Dr Terry Segal - Consultant adolescent paediatrician, Adolescent Specialties Lead, University College London Hospitals, London

Fiona Mckechnie - Occupational Therapist, ME/CFS Advanced Clinical Practitioner, Bristol

Dr Ella Billson - ST4 anaesthetics, West Yorkshire Deanery, West Yorkshire

Dr Esther Mitchell - GP, Shetland

Dr Alice Leaney - GP, Somerset

Dr Leanne Royle - Consultant Paediatric Radiologist, Sheffield Children’s Hospital, Sheffield, 

Dr Angela Rowntree - GP and Occupational Health Practitioner, Oxfordshire

Dr Sophia Williams - CAMHS Psychiatrist (ST6), London

Dr Rosemary Shilling - Consultant Anaesthetist, Midlands

Dr Ian M Frayling - Consultant in Genetic Pathology (retired), Honorary Senior Clinical Research Fellow, Cardiff University, Wales

Lesley Pickering - Specialist Occupational Therapist, North West Fatigue Clinic and Yorkshire ME/CFS Service, Lancashire

Dr Holly Vickers - Consultant Urogynaecologist, Mid Yorkshire Teaching Trust, Yorkshire 

Dr Gregory Gibson - Resident Doctor, London

Sue Mangan - Practice Nurse, Primary Care, Greater Manchester

Dr Charlotte Morris - GP, Greater Manchester

Rebecca Matthews - Delivery Suite Coordinator, Harrogate and District Foundation Trust, Harrogate

Dr Leila Hummerstone - GP, Pickering Medical Practice, North Yorkshire

Dr Heather Reid - Paediatric Registrar, Royal London Hospital, London

Dr Tessa Dessain - Anaesthetic Registrar, Bristol

Hannah Ashcroft - Advanced Clinical Lead Practitioner, Leeds Teaching Hospitals, Leeds

Dr Alice Reid - Foundation Year 1 Doctor, Royal Devon and Exeter Hospital, Devon

Dr Rory Gilligan - FY2 Doctor, Wessex, Wessex Deanery

Larissa Robson - Practice Nurse, Cumbria

Sejal U Patel - Pharmacist, Grove Pharmacy Bookham

Soram Patel - Pharmaceutical physician, London

Dr Adam Marnell - GP, Merseyside

Louise Humphrey - Clinical Specialist Children's Physiotherapist, Devon, Torbay Hospital

Dr Amour Patel - Anaesthetics Registrar, London

Dr Dee Burrows - Nurse, Devon, Energise Health & Lived Experience Consultancy, Long Covid

Dr Clare Singleton - GP, Greater Manchester

Dr Graham Lloyd-Jones - Consultant Radiologist, Salisbury NHS Foundation Trust

Brian Hughes - NHS Executive, Northern Ireland

Dr Hannah Preston - Doctor registrar, Scotland, Lothian

Dr Jane Macaskill - Consultant Surgeon, Scotland

Dr Emma Weisblatt - Consultant in Developmental Neuropsychiatry (retired September 2024), East of England, University of Cambridge

Dr Jenny Ceolta-Smith - Retired Occupational Therapist, North West England

Dr Jane Preston - Consultant Gynaecologist, East of England

Susan Hedgeley - Physiotherapist (Medically Retired Long Covid), Scotland

Dr Lydia Dodd - GP, Merseyside

Victoria Kinsey - Speech and Language Therapist (medically retired), Suffolk

Jacqueline Roberts - Clinical Scientist (Medical Physicist in Nuclear Medicine), West Yorkshire, Leeds Teaching Hospitals

Donna Louise Merritt - Nurse Practitioner, North West

Karen West - Physiotherapist, AHP Lead Long Covid, South Central

Isabella Howes - Paediatric Registered Nurse, London

Dr Rebecca Hyslop-Peart - Consultant, Manchester

Dr Raymond Haddock - Doctor Medical Psychotherapy (retired), Yorkshire

Dr Stephen Taylor - GP, Manchester

Dr Rosemary Haddock - Medical Doctor (Gastroenterologist), Scotland

Kirsti Otterson - Paramedic, Newcastle

Helen Skiffington - Occupational Therapist (currently too unwell to work due to Long COVID), London, Long COVID Physio

Dr Isla Hislop - GP, Scotland

Ed Bateman - Paramedic, South West

Dr Nicholas McGivern - GP Registrar, South Yorkshire

Dr Kevin Deans - Consultant Chemical Pathologist, Aberdeen

Christine Pearson - Consultant Clinical Psychologist, Dorset

Dr Neera Jaitly - GP, Surrey

Natalea Purnell - Emergency Nurse Practitioner, Bristol

Angela Marsden - Advanced Nurse Practitioner in General Practice (medically retired), East Sussex

Jane Harriman - Nurse RGN and nurse manager (retired), South Yorkshire

Lindsay Skipper - Physiotherapist, South East England

Evelyn Walton - Nurse lecturer and Advanced Nurse Practitioner, North of Ireland

Rosemary Papachristopulos - Nurse, Northern Ireland

Robin Collins - Advanced Physiotherapist, Lancashire

Charlotte Rawlinson - Pharmacist and ME Association Health and Social Care Project Officer, North Yorkshire

Liberty Mellor - Registered Nurse, Lancashire

Dr Ailsa Stuart - Clinical Psychologist, Oxfordshire

Linda Campbell - Advanced Nurse Practitioner, Primary Care, Northern Ireland.

Northern Ireland, Chair and Healthcare Professional Advisor for the Charity Hope 4 ME & Fibro NI

Emily Ellett - Dietitian, Leicestershire

Kate Turkentine - Registered nurse, Bristol

Dr Carolyn Lott - GP, Midlands

Orla Sullivan - Specialist Occupational Therapist, Lanarkshire Scotland, Covid Rehab Team

Fiona Wood - Registered nurse (retired), Bournemouth Dorset

Carole Bruce - Psychotherapist, Gloucestershire

Grainne O'Connell - Advanced Nurse Practitioner, Northern Ireland

Elizabeth Scott - Therapeutic Radiographer, Yorkshire

Georgina Lidgey - Radiographer, South West

Dr Isaac Matthias Buhagiar - Foundation Doctor, Scotland

Gillian Davidson - Speech and Language Therapist, Scotland

Alma McQuade - Art Therapist, Northern Ireland

Dr Claire Vandevelde - Consultant Rheumatologist, Yorkshire

Janette Hopkins - Associate Director of Nursing (retired), North West

Jennifer Vaudin - Health Visitor (no longer in practice), East Midlands

Rose Bannister - Dietitian, Lancaster

Lara Brummell - Dental Nurse, Derbyshire

Dr Robert Harrison - GP, Devon

Dr Linda Dykes - Consultant in Emergency Medicine and GP, West Midlands

Dr Saksham Bansal - Orthopaedic SHO, Manchester

Dr Antony Natt - GP (retired), East Midlands

Olivia Hoare - Occupational Therapist (retired on ill health), Bristol

Laura Maloney - Occupational therapist, Wales

Cara Eryl Howe - Registered Band 5 Nurse, East of England

Sue Dumps - Specialist nurse (retired), Brighton

Nicola Jones - Senior staff nurse, South East

Jen Wandel - Speech & Language Therapist (ill health retired), London

Lauren Stevens - Physician Associate, London

Dr Katie Nisbet - Junior Doctor, Manchester

Elizabeth Biggs - Occupational Therapist, South East

Rebecca Scott - Registered Nurse, Brighton

Natasha Wilkinson - Physiotherapist, London