9 May 2024
Open letter calling for the Royal College of Occupational Therapists to make a public response to the harmful government rhetoric, demonisation, and policy proposals targeted at disabled people and people with long term health conditions

9th May 2024

Dear Steve Ford

Re: Call for a public response from the Royal College of Occupational Therapist’s CEO regarding the Government’s harms to disabled people and people with long term health conditions

I am an occupational therapist suffering with Long Covid, a disabled person in receipt of benefits with a professional background focused on the Department for Work and Pensions’ (DWP) policy, practice, and research for the last 17 years. I am writing this open letter to you to call upon the Royal College of Occupational Therapists (RCOT) to take a public stand and urgently call out the harms that our government are causing disabled people and people with long term health conditions.

A public response from the RCOT is imperative given occupational therapists play an instrumental role in supporting disabled people and those with long term conditions to engage in meaningful occupations in all aspects of their daily lives which may include paid work.

Of key concern is the minimisation of peoples’ ill health which has been particularly targeted towards people who are in receipt of benefits who experience mental illness. For example, see letter by Dr Jay Watts clinical psychologist (1)

I am not alone in my thinking on these matters, for example see Disability Rights UK March 2024: “on 18 March 2024, the UK Government provided their oral defence to the United Nations Committee for the Rights of Disabled People (UNCRDP), regarding the UK’s “grave and systemic” violations of the UNCRDP”. “Rapporteurs described current UK policy and practice as “a pervasive framework and rhetoric that devalues Disabled people’s lives” which “tells Disabled people that they’re undeserving citizens” and “makes [Disabled] people feel like criminals” – particularly those who are trying to access the social security system”. Disability Rights UK March 2024 (2)

There are many matters to raise with you that are of significant concern, but I urge you to review and call out the harmful misinformation by our Tory government (and Labour) regarding Personal Independence Payment (PIP). For example, Mel Stride wrongly reported to the BBC in April 2024 (3) that:

“What we know with PIP is that it’s a very blunt benefit, so you get a fixed amount of money per month, irrespective in many ways of your condition – in some cases that may be a condition that needs something like a grab rail to get into the bath and various other appliances of that kind – which are relatively inexpensive, you might even be able to get them from your local authority or local NHS, and yet the PIP benefit is thousands of pounds a month.”

PIP is a non means tested benefit to support people with the extra known costs incurred by disabled people and those with health conditions have in moving around and undertaking daily activities. It is not an out of work benefit, yet paid work is being positioned by Ministers as the cure for all disabled peoples’ needs.

So we see that the PM has talked about the ‘sick note culture’ ‘ life style choice’ in his reforming of welfare plan. (4) In addition to a Labour MP Alison McGovern who stated that “every aspect of the benefit support for disabled people must help people get into work” (5)

I value and support the unique contribution occupational therapists offer for example, in occupational health and vocational rehabilitation roles, but it is vital that they think critically about the Ministers’ unsafe and unsubstantiated claims that paid work is the only solution to meeting the needs of disabled people and people with long term conditions. RCOT must advocate to ensure that people who cannot undertake paid work are not dehumanised but valued, can access care, and financial support to lead meaningful lives. Peoples’ quality of life should not be threatened or disregarded if they cannot work.

Furthermore ‘good’ work is commonly cited to evidence from 2006 and claimed to be generally good for people’s health and wellbeing. (6) But questions are raised as to whether all occupational therapists understand what ‘good’ work means for disabled people and people with long term conditions (including Long Covid) in 2024. For example, is there enough awareness of employers who do not do the right things for workers and we know that some disabled people have had to take insecure work of poor quality. (7) In addition to how fear inducing and punitive the DWP policies are for people in terms of conditionality, sanctions, civil penalties, and the suspension or stopping of benefits. Disturbingly the DWP aim to increase covert surveillance and gain access to peoples’ bank accounts too. We also see the cruelty the DWP is placing on unpaid carers.

Moreover, RCOT should not be ignoring the ongoing failures in public health messaging with many workplaces being unsafe and harmful to our health with no COVID-19 mitigations e.g. clean air. Thousands of people in the UK have become disabled with Long Covid and many have been unsupported by their employer and had to leave work. (8,9) But people with Long Covid have struggled to access benefits as shown in your own report, which I was pleased to have the opportunity to influence at the survey design stage. (10)

Importantly occupational therapists practice in many settings and may provide evidence to people for a benefit claim and fit notes. They may work for the DWP or their contractors as medical assessors for benefits such as PIP and within associated employment support provision. Therefore, occupational therapists deliver the DWP’s policy at the front line. So, I am concerned to hear that occupational therapists who work in these DWP’s assessor roles have experienced ethical dilemmas and workplace pressures. (11)

It is vital that RCOT reflects on occupational justice and occupational deprivation because the Government’s proposals will harm individual’s and whole families’ health and wellbeing, potentially damaging relationships and putting lives at stake.

Yet our government still insist on enacting punitive social security policies based on unfit for purpose medical assessments, conditionality, and sanctions. We know that many people face an arduous experience when making claims for health benefits including PIP and many endure lengthy tribunals and the worsening of their health and wellbeing. Some people have taken their own life. (12)

I signpost you to an example of a response where I raised concerns to the DWP in the work capability assessment (WCA) consultation for Long Covid Support (covering the substantial risks for people with Long Covid and Myalgic encephalomyelitis (ME) (13). Worryingly we hear that the Government’s proposed cuts to benefits will impact 450,000 people. (14)

I value the work of RCOT and understand that you meet with stakeholders including the DWP. However disabled people ascribe to the ethos of nothing about us without us, and therefore I ask you to publicly state if you are planning to consult with disabled people who are in receipt of benefits (e.g. PIP, Employment Support Allowance (ESA) Universal Credit) including occupational therapists when responding to the Government’s consultations (e.g. on the fit note and PIP). This is vital because it is only through understanding the lens of lived experience that we can truly advocate and be an ally to those we aim to support. The RCOT holds a privileged position and can make a difference to peoples’ lives but true collaboration with disabled people is paramount if this privilege is not to be misused.

I urge you and all in RCOT to lead by example to your members. Please do not be silent because occupational therapists bear daily witness to the harms to health and wellbeing disabled people and people with long term conditions face for example, in seeing the daily struggles which include people not being able to afford the essentials to live, no food, no gas or electricity to light and heat their home. (15) These struggles are compounded by financial hardship, the cost-of-living crisis and known health inequalities as recently reported by Professor Sir Michael Marmot. (16) Furthermore, there are almost seven million people waiting to access NHS care (17) and we have an increase in suicide especially in younger age groups.

I have framed this letter specifically to RCOT, but it is of strong relevance to all allied healthcare professionals and related professional bodies, and so I please ask you to raise the concerns in this letter with the Allied Health Professions Federation as a matter of urgency and a statement calling out the above harms from each of the allied healthcare professionals (AHP) professions is vitally needed too.

I invite all stakeholders who have similar concerns, are impacted by the matters raised in this letter and especially my peers in occupational therapy and other health and social care professions to co-sign this letter to show the need for the RCOT to respond. Please sign as both individuals and groups.

Yours sincerely

Signatories

Dr Jenny Ceolta-Smith, occupational therapist

Reference links:

195
signatures
176 verified
  1. Sam Williams, Advocate, Okehampton
  2. Kerren Garner, Hove
  3. Musharrat Jabeen Ahmed-Landeryou, LSBU, Occupational Therapy Educator UK
  4. Catherine Edgson, London
  5. Lisa Rathane
  6. Helen Skiffington, Occupational Therapist on pause as too unwell due to Long Covid, Long Covid Physio, London
  7. Jess Plant, Activist and advocate, Canvey Island
  8. Kirstie Sivapalan, Previously HR professional living with M.E., Hertford
  9. Shirley Widdop, Disabled Campaigner, N/a, BRADFORD
  10. Jaimie Pattison, Unable to work due to Severe ME/CFS, Oxford
  11. Sandra Perry, Hairstylist- Carer, Hull
  12. Colette Fegan, Retired OT, Sheffield
  13. Andrew
  14. Bettina, Nottingham
  15. Nicola De Boo, Cambridge
  16. Sharon A Chapman, Stay at home parent/ carer, Brighouse
  17. Kate Mac, Disabled long covid, Disabled long covid, Edinburgh
  18. Polina Sparks, Employment support advocate, Long Covid Support, Manchester
  19. Steve Haynes, Long COVID, Derby
  20. David Palmer, Sutton in ashfield
  21. Joan Watkins, Retired, Sheffield
  22. Stephen Hough, manufacturing, Accrington
  23. Phil Sharp, Retired drug counsellor, N/A, Carlisle
  24. Catherine Hale, Researcher, Kings College London, London
  25. Stuart T, -, -, Milton Keynes
  26. Brighid Ó Dochartaigh, Medically retired (because of long covid) Geologist, Edinburgh
  27. Suzanne Wheelaghan, Occupational therapist, Carer, York
  28. Samantha Thompson, Retired due to MS, Suffolk
  29. Nicky Brennan, Former Paralegal/LawTrainee, now disabled, Derby
  30. Elizabeth Bassnett, Medically retired Counselling Therapist, Hebburn
  31. Emma Scales, Shropshire
  32. Clare Rayner, Doctor, Manchester
  33. Natasha
  34. Sue Hilsdon, Occupational Therapist, Semi-retired independent OT, Devon
  35. Alison Twycross, Nurse, Supporting Healthcare Heroes UK, Aylesbury
  36. Darren Winch, Ex Traffic Officer, Long Covid Patient, Kent
  37. Ian Tucker-Bell, Educator, Tonbridge
  38. Jane Wingfield, Cambridgeshire
  39. Olivia Newman, Chronically ill, part time project worker, Cambridge
  40. Alex Sprackland, Engineer, Tunbridge Wells
  41. Sarah Burrows
  42. Tracy Meggitt, Medically retired Biomedical Research Associate, Wath Upon Dearne
  43. Mark Harper, Chair, Cambridge ME Support Group, Cambridge
  44. Paula McShane, Downpatrick
  45. Christina Brooket, Carer to my daughter who had ME/CFS, Carer, Stirling
  46. Elisabeth Murray Klaar, Cambridge
  47. Ms E Wooller, Clinical Coder, UHBW, Bristol
  48. Jo Dainow, Chair of Trustees, Long Covid Support, London
  49. Paula Daley, Psychotherapist, Nottingham
  50. Elizabeth Clarke, Consultant, Surbiton
  51. Harriet Carroll, Long COVID consultant, Long Covid Scientific Consultancy, Aberdeen
  52. Jason Batchelor, Bracknell
  53. Mrs Susan Dougill, Bolton
  54. Julie Houston, Unable to work due to ME, Alexandria
  55. Linda Hending, Disabled by ME 11 years, Gloucestershire
  56. Alexia Lewis, Off sick, Lytham St. Annes
  57. Tanya Walker, Administrator, SWHH Ltd, Newton Abbot
  58. Nikki Smitb, Disabled by Long Covid, Windsor
  59. francesca lo castro, public policy consultant, Long Covid Support/ Rete Long Covid Italia, london
  60. Sharon Askew, Parent/Carer of ME child, Yorkshire
  61. Cat Fraser, Bristol
  62. Geoff edwards, Disabled, Awareness to MND., Southend
  63. Heidi Connahs, Battle
  64. Katy Bruce, M.E patient, -, London
  65. Barbara Melville, Director, The Otherword Project, Edinburgh
  66. Maddy Corper, Ill health retired train driver, Long Covid Choir, Borehamwood
  67. DSE Dunn, London
  68. Helen Lunt Davies, Campaigner, Long Covid SOS, Tetbury
  69. Vicky, OT, NHS, Sussex
  70. Jenny Wilson, ME for 53 years, FENITON
  71. Emma Bartlett, Occupational Therapist., Educator and researcher, West Yorkshire
  72. Sarah Boyle, Norwich
  73. Stuart McIver, Trustee, board memeber and advocate, Long Covid Scotland, Edinburgh
  74. Emma MacNab, Occupational Therapist, NHS, London
  75. Conrad Barrow, Engineer, DSSR, Manchester
  76. Patricia Milne, Medically retired, Manchester
  77. felicity Jeyes, Physiotherapist (unable to work due to Long covid), Long Covid Physio, Solihull
  78. Georgia Vine, Graduate Teaching Assistant, University of Huddersfield, Sheffield
  79. Ms P Terrer-Perez, Occupational thetapist, OTs4Schools CIC, London
  80. Megan Shepherd, Sheffield
  81. Joe Hardy, Bicester
  82. Tracey Burgess, Previously a Counsellor/Psychotherapist, Cork
  83. Robert Messenger, Carer, Carmarthen
  84. Alastor
  85. Richard Roels, Occupational Psychologist, (4 long years of Long Covid), London
  86. Alex Fisher, OT, NHS, Birmingham
  87. Becki CooK, Occupational Therapist, NHS, Stroud
  88. Jane Macey, Gillingham
  89. KAREN WRAGG, unemployed, British
  90. Mari Rolland, OT, Powys
  91. Eden, Na, Belfast
  92. Ruairidh Milne, retired doctor, Southampton
  93. Pen Hutchinson, Retired OT, Lancaster
  94. Anna Buchanan, Living with Long Covid, Aberdeen
  95. Mike Ormerod, living with Long COVID, Leeds
  96. Lynette Munday, Occupational therapist, LCH, Leeds
  97. Margaret Baldwin, Maternity support worker, Elht, Burnley
  98. Ane Valera, Research Assistant, The University of Edinburgh, Edinburgh
  99. John Angel Bond, Unemployed, Ebbw Vale
  100. Clare Copley, Retired professional. ME & Long Covid, Stroud
  101. Oonagh Cousins, Researcher, Oxford University, London
  102. Simon Alan MANSEL, MGS, Self-employed, Birmingham
  103. Harriet Clarkson, Occupational Therapist currently unemployed due to Long Covid, Colchester
  104. Liz bilioni, Health visitor, Northants
  105. Emma Copeland, Dietitian (medically retired due to long covid), Sussex
  106. Richard Cann, Retired, Callington
  107. Dr Marianne Seebold, Ill health retired by NHS due to Long Covid
  108. Jason Ankers, Disabled, N/A, Kinghorn
  109. Emma Heath, Advocate, Manchester
  110. Andrew Mackenzie, Kilmarnock
  111. Sharon foulds, Newcastle,
  112. Matthew Prince, Local Government, Barry
  113. Ian Frayling, Medical Pathologist with Long Covid, Long Covid Support, Cardiff
  114. Steven Topple, Journalist, The Canary, London
  115. Sally Dodgson, Disabled, N/A, St. Helens
  116. Elspeth M Moncrieff, Long term disability, Cornwall
  117. Abbie McAinsh, Carer, Lancaster
  118. Dr Naomi Harvey, Chronically ill with ME/CFS
  119. Yann Kull, Disabled Patient, Chippemham
  120. ALISON THOMSON, Living with ME
  121. Maria-louise Williams, Disabled Severe M.E, Brighton
  122. Fiona Wood, Sick with Severe ME, Bournemouth
  123. Lisa Agyen, Civil servant, Greater London Authority, London
  124. Kirsty Stanley, Occupational Therapist, Occupation4Life Ltd, Poole
  125. ed sum, Occupational Therapist, Glasgow
  126. Caroline Maddocks, Previous OT, Let go from NHS due to contracting long covid, Stockport
  127. Dr Katherine Cushing, Retired, Retired NHS doctor with Long Covid, Newcastle
  128. Elaine Hickling, ME Warrior, Pembroke
  129. Dr Sally Walker, Retired GP, Tyneside
  130. Anita atwal, Occupational therapist, London South bank university, London
  131. Beth Woodburn
  132. Nia, Senior physiotherapist, ACU, Sydney
  133. Loraine Grobler, Ill, Long term chronic illness, Winchester
  134. Greet Janssens, Physiotherapist, Hertfordshire Community NHS Trust, Welwyn Garden City
  135. Nm Colins, Belfat
  136. Fran Springfield, Retired RGN, Chronic Illness Inclusion, London
  137. John Karley, London
  138. Caroline Trevor, Occupational Therapist, HEI, Kent
  139. Mary Kelly, Physiotherapist
  140. Nick, Medically Retired, Million Missing Voice Global (hiatus), Gillinghan
  141. Roxanne Talbot, Occupational Therapist, Grantham
  142. Tai Frater, Allied health lecturer, University of Winchester, Winchester
  143. Rachel Booth-Gardiner, Lead Occupational Therapist, TEVW NHS Trust, Middlesbrough
  144. Sue Parkinson, Retired OT, Chesterfield
  145. Marcos Rodrigues, Physio, McGill University, Westmount
  146. Katherine Gault, Preston
  147. Ondine Sherwood, Co-founder and CEO, Long Covid SOS, London
  148. John Chacksfield, Occupational Therapist
  149. Garry, Volunteer, LongCovidSOS
  150. Claire Hastie, Advocate, Durham
  151. Sarah Fay
  152. Jane Ormerod, Advocate volunteer, Long Covid Scotland, Aberdeen
  153. Mark Cytera, Bristol
  154. Donna Hamilton, Information & Research Officer, Falkirk Council, HSCP, Bo'ness
  155. anonymous
  156. Hamilton, Retired, Bo'ness
  157. Nicola Ritchie, Physiotherapist, NHS, Aberdeen
  158. Paul Seagrove, IT Consultant, Self-employed, Harpenden
  159. Kath Drummond, Foster Carer, Self employed, Girvan
  160. Julia Cameron, London
  161. Dr Helen Murrell, retured GP, Unite, Newcastle
  162. Evelyne Sassoon, London
  163. Susan Watt, London
  164. James Glen, Volunteer, Long Covid Support, UK
  165. Jo Lane, RN Dip HV, Personal capacity, Leicester
  166. Leore Greene, London
  167. D Hughes, Solicitor, London
  168. Sarah Martin, Glasgow
  169. Sandra Lewis, Occupational Therapist, West Yorkshire
  170. Hannah Sharland, Poole
  171. Helen Ford, Occupational therapist, East Yorkshire
  172. Amanda Turgoose, Occupational Therapist, Harrogate
  173. Louise Vale, Long Covid patient & advocate, Salisbury
  174. Zack Murrell-Dowson, Long covid sufferer currently, Bristol
  175. Natalie Rogers, Trustee, Long Covid Support, Lancaster
  176. Bill Clayton, Retired, The York ME Community, York
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