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.
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
Wow! Thank you for all you are doing. I’m humbled. Things have to change. I’ve been ill 15 years next month. I used to be a nurse and at the same hospital I was refused treatment via accessing the fatigue services because the head of Dorsets fatigue service would only diagnose me with fibromyalgia but not ME as well. When I asked why not, his reasoning was because he doesn’t give out two diagnoses 🤷♀️
Three years later I finally got diagnosed by an ex colleague of his privately in Hampshire. I now have severe ME & bed bound but up to the bathroom.
Yesterday I was in hospital for a procedure and the nurses didn’t know what ME was. I asked if the bright light above me could be switched off but she pulled the curtain instead. A while later the male nurse in charge asked the nurse why was the curtain drawn and the reply was oh she’s got a migraine and she’s anxious. That was a lie because those words didn’t come from me. The nurse in charge tutted & sighed then mentioned anxiety & chuckled.
I was asked if I needed anything specific in the treatment room and I mentioned noise & light as they can trigger my seizures. I was told that had been relayed to the nurses in the treatment room. When I arrived a nurse said your mood lighting awaits. I didn’t laugh. I had several seizures during the procedure.
And this was a good experience compared to others which makes it all so much worse!
#ThereForME
I’m so glad you keep pushing for us – thank you! I wonder if it would also be fruitful to approach the Lib Dems given care was their top priority in the last election and there’s been a lot of recent press about how they’re trying to ensure Wes Streeting invests in the NHS beyond keeping it afloat.
If it worked, we would have the benefit of their influence and they would have the benefit of positive media attention for supporting a severely neglected and marginalised group.