Open Letter concerning the withdrawal of adult autism/ADHD assessments in York and North Yorkshire
Open letter to NHS England, Humber and North Yorkshire Integrated Care Board, and the Rt Hon Steve Barclay, Minister for Health.
We the undersigned are writing to express our grave concerns about the decision made by York Health and Care Partnership (YHCP) to heavily restrict access to autism and ADHD assessments for adults as a means of cutting costs under a new 3-month pilot. The new criteria propose that adults are only referred for assessment in the following circumstances:
Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing
[source: York Disability Rights Forum]
The changes to the criteria, which were implemented on Monday 27th March, suggests that the Do-It Profiler should be used instead as a self assessment tool to identify support needs for most adults who present in need of autism or ADHD assessment. While we acknowledge the Do-It Profiler as a useful aid, this tool has not been clinically validated and cannot provide a formal diagnosis of the kind that would be needed for eligibility for support and benefits such as PIP or new style ESA.
As York Disability Rights Forum has pointed out, the implementation of the Do-It Profiler in this context contravenes the rights of NHS patients to “be treated with professional standards by qualified and experienced staff". It also does not align with NICE guidelines on the criteria for adult assessment. People should not, as YHCP are proposing, need to get to crisis point to be able to access appropriate diagnosis by a qualified professional and suitable care for their needs.
As a specialist service working with and staffed by many late diagnosed adults, we know that assessment and diagnosis in adulthood, even in later life, can be life changing. Late identified autistic and ADHD adults have often struggled for their entire lives not understanding why things always felt that bit harder for them than their neurotypical peers. Autistic and ADHD adults often come to their diagnoses after multiple episodes of burnout, or years of shame and struggles with mental health, often finding little or no relief in therapies that are not adapted to their needs. Life as an undiagnosed adult can be painful and difficult. A diagnosis, where needed and meaningful for the person, can provide relief and a gateway to self compassion and a more authentic, supported and adapted life. Access to assessment and diagnosis should not be dependent on ability to pay, which will effectively be the impact of the proposed changes.
We are concerned that York Health and Care Partnership's decision has been made without due process, risk assessment or cost/benefit analysis, and without consultation with patients and families/carers. The decision therefore does not take into account the real lived experiences of autistic and ADHD adults, or the potential costs and risks to individuals, the NHS and society of leaving adults without diagnosis and support. Cutting assessment costs may appear to save money in the short term, but we believe YHCP have failed to consider the longer term increased costs and pressures for other services such as primary care, IAPT and community mental health teams. If adults must reach crisis point before even being considered for assessment, there are also potential costs and pressures for other services such as social care, emergency services and mental health crisis services.
We call on YCHP to reinstate adult assessments with immediate effect and to undertake proper consultation with patients, autistic and ADHD adults in the community, and families/carers and conduct a proper impact assessment before making any changes to the pathway.
We call on NHS Humber and North Yorkshire ICB to review these changes in line with their aims for mental health and wellbeing in the region: "We want people of all ages who experience mental health problems, have learning disabilities and/or Autism to live healthy lives, be able to achieve their goals and be accepted and supported in the communities they live in". We believe these changes in York and North Yorkshire will harm these objectives and create further health inequalities for neurodivergent adults.
We call on NHS England to halt any further arbitrary sweeping changes or pilots of this kind within other areas and to insist that health authorities continue to offer assessment to adults according to NICE guidelines. We do not want this to become a blueprint for restricting access in other areas of the country, putting more adults at risk.
We call on the Health Minister, Steven Barclay, to prioritise protecting the right to NICE approved assessments for adults and to consult further on how access to assessment, diagnosis and support within the NHS can be improved to better support autistic and ADHD adults in the community, at home and in the workplace.
To sign this open letter, please fill out this form with your details and we will add your name to the list of signatories.
Signed
Health and Allied professional signatories
Elizabeth Smith MBACP (Accred), Counsellor/Psychotherapist, Founder and Director, Free2BMe Therapy Services
Darren Monsiegneur MBACP, Director for Training and Development, Free2BMe Therapy Services
Dr Rebecca Jackson, Positive Psychology Coaching Research Practitioner
Helena Fitzpatrick, Assistant Psychologist and trainee counselling psychologist
Zena Nicholas, Counsellor, Zena Nicholas Counselling
Anneka Barrett MBACP, Psychotherapist
Anna Morelle-Grey MBACP
Karen O’Connor RNLD
Phillippa Norton MBACP
Andrew Harvey, Counsellor
Clare Dudeney, Counsellor (MNCS Accred)
Tara O’Donnell-Killen, Psychologist MBPsS, MPSI, MAPA
Thriving Autistic
Dr Monique Botha, Psychologist
Jill Holly Beason MBACP, Jill Holly Counselling
Hannah-Phoebe Bowen MBACP
Tanya Adkin, autistic trainer/consultant/advocate
Nyla Moran, Counselling Psychologist in Training & Occupational Therapy Clinical Support Worker
James Knight, Counsellor & Psychosexual Therapist, MBACP, COSRT student member
Helen Bennett MBACP
Joanne Poole MBACP
Jennifer Snow, Counsellor (MNCS Accred)
Dr Sally Morgan, Clinical Psychologist
Dr Jen Davies-Owen MBACP
Prof. Nancy Doyle
Sandra Woodman, UKCP accredited psychotherapist
Mary Chelinski, Crisis Support Worker
Hazel Green, Counsellor
Becky Hall MBACP
Carla Boulton, Counsellor Prof Accred MNCS
Georgina Turner, LLB MBACP
Not So Typical Counselling
Nikki Ellen, MNCS Accredited Counsellor
Madeline Strong, Integrative Arts Therapist UKCP
Fiona Daniels, Social Worker
Julia Fry, Therapeutic Coach for Neurodivergence
Andie Alker MBACP, Accred Practitioner UMHAN, MHP
Rebecca Antrim, Therapist/Neurodiversity Consultant, FdSc, MBACP
Georgina Wong CPsychol
Marjorie Raymond, Psychologist
Charlie Eckton, Psychologist BPS 303315
Angie Alderman MBACP, Genius Within
Dr R Huggins MBChB BSc MRCGP PGcert (Med Ed)
Karen Royle, Chartered Psychologist
Jess Glenny YTT (Elder), PRYT cert, C-IAYT, RSME/T, Open Floor cert, PhD
Kat Band- Assistant Director, Barnardo's (awaiting adult ADHD assessment)
Dr Lucy Morris, Clinical Psychologist
Sam Sharman-Dunn MBACP
Irina Marenica Psychologist ClinPsych OccPsych MBPsS
Liz Driscoll MBACP
Dianne Foy MBACP
Autism and ADHD Journey @SENDinfoBucks
Katie Henshaw Autism & ND Counselling & Support (MNCS Accred)
Susie Bates MBACP
Stasa Morgan-Appel MNCS Accred
C. Tuplin, Clinical Associate Psychologist
Shelley Henderson MBACP
Bartley Rock, Senior Occupational Therapist
Sue Moon, Speech and Language Therapist
Pebble Autism
Lisa Chapman, Speech and Language Therapist
Suzanne Wheelaghan, Occupational Therapist
Paula McGowan OBE
Elaine McGreevy, Speech and Language Therapist
Access Communication Ltd
Robin Lindop Fisher, Speech and Language Therapist, CertRCSLT
David Gray-Hammond, Independent Advocate
Glasgow University Disabled Students Association (GUDSA)
Lesley Dougan, Counsellor MNCS (Snr Accred) MBACP (Accred)
Lorraine Lentell, Nurse NMC
Mike Steel, Independent Advocate
Hattie Porter, Occupational Therapist
N. McMullen-Klein, Occupational Therapy RCOT and HCPC member
Nick Rosenthal, Autism Awareness trainer/peer mentor
Georgia Holden-Burnett, Deputy Manager for Yorkshire Autism AIM
Leeds Autism AIM and Yorkshire Autism AIM - Part of The Advonet Group
Dr Victoria Gray, Specialist Autism Support Worker & Autistic Person
Dr Jay Watts, Consultant Clinical Psychologist and Psychotherapist
Lou Greenfield, Occupational Therapist
Nanette Mellor, CEO, The Brain Charity
Dr Siobhan Tierney, Principal Clinical Psychologist
Dr G.V Tyerman, retired GP
Catherine Tyerman, Clinical Psychologist
Dr P F Tyerman MB |ChB
Hilary Conroy, Social Worker, SWE and BASW
Trish Hobman MBACP
Jacqui Wallis, CEO, Genius Within
Dr Jonathan Oliver, Clinical Psychologist
Georgina Wilkinson, Trainee Clinical Psychologist
Eve Annor-Cole, Prison Neurodiversity Manager
Rebecca Robinson, Carer Support Worker
Steffen N, Clinical Psychologist
Tasha Walsh MBACP (Accred)
Seen & Heard Therapy Limited
Dr Kate Jenkinson, Executive Coach and Fellow of the CIPD
Next Step HR Ltd
Katy Brooks, Trainee Clinical Psychologist
The Flower Umbrella
Cat Owens, Head of Activism for the ADHD As Females Community
Rachael Slattery, Cancer Support Assistant, NHS
Shaine Davis, Dramatherapist Trainee, BADth
Charley Alcock, Hypnotherapist and EFT Practitioner
Beth Taylor, Lecturer in Health
ADHD As Females
Helen Booth, Trainee Art Psychotherapist
Jen Cooke, NMC registered mental health nurse - Senior Advanced Clinical Practitioner
Emily Johns, Emotional Wellbeing Practitioner (Mind)
Camille Duff, NHS Biomedical Support Worker
Cheshire Disabled People Against Cuts
Katie Stewart, Mental Health in Education lecturer
Mary Fredisdottir, Registered Nurse NMC
Sarah Kervin, Nurse
Emily Clark, Counsellor
Bee Bentall, Enfield Autism Hub - Peer Support Worker
John Byrom, Retired Nurse
Katie Harrison LPC
Laura Mears-Reynolds, Founder of ADHD As Females Podcast and Community
Fiona Watts, Trainee Counsellor BACP
Amy Pearson, Psychologist, CPsychol
Coral Taylor MBACP
The LUNA Project
Megan Casson MBACP
Members of the public/supporters and allies
Christopher Kershaw, personal trainer
Talia Firth
Stuart Mosey
Kate Eveleigh
Amanda Wowk
Dr Christopher Fitzpatrick
Lynne Powell, carer
Greg Ball, teacher
Iona Smith
Sophia Baker, PhD student in geophysics
Mrs Jean Zaremba
JB, specialist administrator - ASD
Justin Piercy
Lisa Bastiman, former ASD Specialist Administrator
Charlotte Creasey
Stephen Dooley
Ruth Bartlett, Translator
Nicola Birkett
Sabrina Stern
Danielle Gardner
Philippa Sjoberg
Rita Leci
Hollie Stafford
Mrs N Hargreaves
R Williams
S Crawley
Tumi Sotire
Darryl Biggs
Luisa Pires
Jane S.
Helen Irvine, Lecturer
Olivia Streatfield
Fay Stephenson
Bex E. Wellbeing coordinator
Evie Morris
Genna Smith
Harriet Ray
Felicity Taylor
Rebecca House Howe
Jane Kirkwood
Dawn-Marie Farmer
Katri Hastings
Rebecca Love
Felicity Duirwyn
Kirsty Mason, Secondary Teacher
Laura Blackwell
Caroline Monks
Sam Struthers
Simone Bebbington
Robin Jennings
Rebecca Cowley, Working Clasp Jewellery
Alexandra Rathbone
Lizzi Beattie
Lynsey Hoskins
Jim Gates
Gemma Ludlam
Gemma Corker
Katie Robinson
Nicole Nadler
Mel Wakeman
Tracy Wilkes
Stacey Montañés Tena
Emma Stewart
Danielle Williams
Kara Wilkinson
Robin Crump
Emma Buckee
Rebecca M.
Layla Ingle
Evgenia Dubinskaya
Kimberley Pullen
Lucy Guthrie
Jess Cotney PhD
Sarah Kidson
Feather Rose
Rhae Fielding
Lianne Taylor
C. Webster
Zach Ransome
Polly Parfitt
Rachel O’Brien
Colleen O'Brien
Heeral Dave
Vikita D.
Emily O'Connell
J. Landshoff
Jessica Tilley, Project Manager
Morgan Procter - Leggett
Erika Blomerus ACA
Sarah Rudden
Jess Darnes, Copywriter
Claire Gregory
Elizabeth Wickham
Nicole Way
Katherine Anthony, student
Anna Hillyard
Chris Byrom
Louise A Scrivens
Professor David Hudson
Hannah Shelley
Leanne Smith
Kirsty Baker
F. Payne, PhD student
Hannah Murray
Jehan Bowden
Steph Baldwin, Ph.D.
Marianne Kelly
Stephanie Durrant
Ingrid McLaughlin
Tania Howe de la Torre
Laura East
Maz P.
Sarah Groves
Jennifer Denholm
Kim Done
Hannah Dutterer
Leonie Bradburn, Learner Support Assistant
Claire Fagan
Laura Guise, Metropolitan Police
M Hanrahan
Meg Kelly
Laura Lenox
Kimberley Bradbury
Gemma Haigh
Maddie Pawsey
Charlotte C.
Lynn MacKay FCMI
Marta Wyrostek
Vita Pearl
Maggie Gaskell
Jessamin Stewart, Sign Language Interpreter
Ithaka Cordia
Laurene Farren
Agata Varillas
Shelley Woods
Karlla Birtchnell
Rachael Byrom
Claire Johnston
Alexandra Dawning
Camilla Burr
Kirsten McCullough
We thank York Disability Rights Forum for their work in highlighting these issues and for their ongoing support for the neurodivergent community in the York area.
