Neurodivergence

This page contains clinician information, links, resources and relevant prescribing guidance for neurodivergent people.

Please click the topics below for more information.

Current News- Including medicine supply information
Resources
Children and Young People
ADHD
Learning Disabilities
Autism
Oliver McGowan
STOMP
Mental Wellbeing and Emotional Distress
Learning from Lives and Deaths - People with a Learning Disability and Autistic People (LeDeR) Programme

This is a new page which we will continue to build, if you have any feedback, please email: somicb.medicinesmanagementteam@nhs.net

Hospital Passports

For information on STOMP (Stopping Over Medication of People with a Learning Disability, Autism or Both) including the Somerset Foundation Trust Learning Disabilities Team STOMP pathway service see below

Resources

Easy Read Materials

Children and Young People

Resources for Support

Signposting and Guidance

Accessing Needs-Led Support in Somerset.

Families may require additional support, information, and advice. The Children's and Young People service are able to provide signposting information and resources. To speak to someone directly, please contact their helpline (details below).

Useful Contacts and Resources

Autism and ADHD Pathway-Autism and ADHD Pathway

This pathway provides information, resources and guidance for families navigating autism and ADHD services in Somerset. It supports understanding the process, available services, and next steps for children and young people with neurodevelopmental needs.

Somerset Parent Carer Forum CIC Ltd- Somerset Parent Carer Forum CIC Ltd (not for profit) company no. 10227489

A not-for-profit organisation (company no. 10227489) run by parents and carers for families of children and young people with additional needs in Somerset. The Forum offers peer support, information, workshops, and opportunities to feed back about experiences of local services.

WISE Up Workshops- WISE Up Workshops

WISE Up delivers a variety of workshops aimed at supporting parents, carers, and professionals. Topics include understanding special educational needs, managing behaviour, and supporting emotional wellbeing.

Somerset SENDIAS- Somerset SENDIAS

Somerset Special Educational Needs and Disabilities Information, Advice, and Support service (SENDIAS) offers free, confidential and impartial advice to children, young people, and their families regarding education, health, and social care.

Children's and Young People Telephone Advice Line

Our telephone Advice Line is available on 0303 033 3002 for clinical queries:

Monday: 13:00 – 16:00
Wednesday and Thursday: 09:00 – 12:00

Important Reassurance for Families

Please share this information with families and reassure them that assessment is not the key to accessing support in Somerset – the Somerset Children's and Young People Neurodevelopmental Partnership approach is entirely needs-led. Help and guidance are available, regardless of the stage of assessment.

The Somerset Local Offer

Attention deficit hyperactivity disorder (ADHD)

Attention deficit hyperactivity disorder (ADHD) is a neurological disorder that impacts the parts of the brain that help people plan, focus on, and execute tasks. ADHD symptoms vary by sub-type — inattentive, hyperactive, or combined — and are often more difficult to diagnose in girls. Both adults and children can be diagnosed, symptoms are present from childhood. ADHD is not a behaviour disorder or mental illness and is a disability protected under the Equality Act 2010.

ADHD Formulary Chapter

Shared Care Page

Supply Problems and ADHD Formulary Medications

The NHS Somerset Formulary Chapter 04.04 Attention deficit hyperactivity disorder details brands approved by the Medicines Programme Board for prescribing under Shared Care.

Where necessary on a case by case basis, patients taking methylphenidate 12-hour tablets can be switched onto the methylphenidate 8-hour capsules which provide a similar amount of Methylphenidate until the 12-hour preparation is readily available again. Supplies have improved (November 2024), please see the Prescribing and switching between modified-release methylphenidate – SPS - Specialist Pharmacy Service – The first stop for professional medicines advice before switching your patient from a 12 hour methylphenidate preparation to an 8 hour methylphenidate preparation.

The Somerset Adult ADHD Service have provided a conversion table for use below:

12-hours tablets: (Affenid^® XL, Delmosart^®, Matoride^® XL, Xaggitin^® XL, Xenidate^® XL formulary preferred brands)		8-hours capsules- equivalent/ similar dose to switch to: (Meflynate^® XL, Metyrol^® XL and Focusim^® XL formulary preferred brands)
18mg		10mg
27mg		20mg
36mg		30mg
54mg		40mg
72mg		60mg

If using Medikinet^® XL capsules or Equasym^® XL capsules as an alternative, food requirements for dose administration for these brands differs to formulary preferred brands. See Considerations when prescribing modified-release methylphenidate for information on dosing information, including IR to MR ratio of individual brands, prescribe by brand to avoid confusion.

NHS Somerset and NHS Somerset Foundation Trust: Supply Problems with ADHD Medicines

Specialist Pharmacist Service: Prescribing and Switching Between Methylphenidate Modified-Release Preparations

Specialist Pharmacy Service: Continuing management of the ADHD medicines shortage

Specialist Pharmacy Service: Prescribing available medicines to treat ADHD

Specialist Pharmacy Service: Considerations when prescribing guanfacine

Specialist Pharmacy Service: Considerations when prescribing modified-release methylphenidate- Also details release profiles of different brands of modified-release methylphenidate medicines.

Shared Care and Traffic Light System

NICE Guidance

Somerset Adult ADHD service

Somerset Autism and ADHD Pathway for Children

Things to consider if seeking a private assessment

A patient can ask to be treated under the NHS at any time.

When they do so they should usually enter the normal NHS pathway and we advise prescribers to follow Somerset pathway, formulary, Somerset shared care and NICE guidance.

Each case is individual, and a lot will depend upon whether the patients GP has knowledge of the private specialist involved and concurs with the tests undertaken and the private diagnosis or not. If yes, then clinical judgement may allow the prescriber to not refer patient into the start of the NHS pathway prior to accepting shared care but to take a more appropriate action based on diagnosis, results etc already undertaken privately.

Our shared care policies and commissioned enhanced service exist between ICB and local NHS providers. If under the management of a private consultant, clarification should be sought on how they will fulfil their part of patient monitoring, review and drug holidays etc. as Somerset will not have a formal contractual shared care arrangement with private providers.

Some private and NHS providers have historically recommended treatment pathways/investigations and drug initiation/ combinations which we would not support.

All Somerset patients should follow the Somerset formulary and Shared Care guidelines agreed locally, rather than those produced in other areas.

Our guidance matches NHSE and the GMC position that GP’s can accept or decline shared care, based upon their clinical knowledge and their assurance of the diagnosis and recommendations of the specialist asking for care to be shared. We encourage shared care and so if GP does not have the clinical knowledge we encourage, if appropriate, that knowledge gap to be addressed.

Somerset ICB recommends GPs do not accept non-NICE recommended combinations or unlicensed doses which are occasionally requested by NHS or private consultants or outside of the Somerset services for AMBER drugs. Similarly we recommend GPs decline requests for them to prescribe RED drugs.

Patients moving into Somerset from out of area or requesting shared care from their GP should be offered a referral into the SFT Community Mental Health Team who manage adults who have already been diagnosed.

Somerset Council things to consider if seeking a private assessment

ADHD in Pregnancy and Breastfeeding

You can find out more about remaining well before, during and after pregnancy on our Medicines in pregnancy, children and lactation - NHS Somerset ICB page.

The UKTIS and BUMPS websites are a useful source of information on medications during pregnancy:

UKTIS – Evidence-based safety information about medication, vaccine, chemical and radiological exposures in pregnancy

Bumps - Best use of medicines in pregnancy

The preferred drug of choice while breastfeeding is methylphenidate. Information can be found:

Methylphenidate: a medicine used to treat attention deficit hyperactivity disorder (ADHD) - NHS

Methylphenidate - Drugs and Lactation Database (LactMed®) - NCBI Bookshelf

Methylphenidate and breastfeeding. Are they compatible?

The Specialist Pharmacy Service hosts the UK Drugs in Lactation Service (UKDILAS). They can be contacted by healthcare professionals with queries on prescribing in lactation:

Breastfeeding Medicines Advice service – SPS - Specialist Pharmacy Service – The first stop for professional medicines advice

The SPS are currently routinely reviewing their ADHD treatment and breastfeeding page, and can send you additional information if needed.

If treatment causes drowsiness, the safety of bedsharing could be compromised, please share links to safe bed sharing with your patient, including: BASIS – Baby Sleep Information Source

Patient Resources and Information

Patient information leaflets:

Relevant Printable Leaflets from Choice and Medication can be sent to people electronically, or printed out if needed. Translated leaflets are also available.

Driving with ADHD and if relevant with treatment for ADHD- ADHD and driving - DVLA People who drive should inform the DVLA if their condition and/ or their medication affects their ability to drive safely. People should ask their doctor or specialist if they're not sure.

Learning Disabilities

People with learning disabilities (LD) have poorer physical and mental health than other people and die younger. Many of these deaths are avoidable and not inevitable. Annual Health Checks can identify undetected health conditions early, ensure the appropriateness of ongoing treatments and establish trust and continuity of care.

For information on STOMP (Stopping Over Medication of People with a Learning Disability, Autism or Both) see below

Annual Health Check Resources

The Royal College of General Practitioners (RCGP) have published a toolkit which collects guidance and resources to help GPs, practice nurses and the primary administration team organise and perform quality Annual Health Checks on people with a learning disability.

Step-by-step guide to Health Checks for people with a learning disability

Learning Disability Annual Health Checks - Registered Care Providers Association (rcpa.org.uk)

Clinical guide for front line staff to support the management of patients with a learning disability and autistic people

NHS England have produced a Clinical guide for front line staff to support the management of patients with a learning disability and autistic people which is relevant to all clinical specialties and includes information on diagnostic overshadowing, healthcare passports, making reasonable adjustments and understanding behavioural responses to illness, pain and discomfort, as well as a number of other important considerations.

Constipation and people with a learning disability

Some people with a learning disability are more at risk of constipation than the general population. Reviews into the deaths of people with a learning disability have shown us that too many people are still dying from constipation. It is important to correctly identify constipation in people with a learning disability.

NHS England have produced constipation leaflets with information for healthcare professionals and information for families and carers to help identify constipation in people with a learning disability and what to do if you think someone is constipated. Easy Read versions are also available from NHSE and Mencap.

Making information and the words we use accessible

Separating learning disability from learning difficulties and mental health issues

Learning disability is often confused with learning difficulty or mental health problems. Specific learning difficulties such as dyspraxia and dyslexia that affect a subset of skills, are not the same as a learning disability.

A learning difficulty does not affect general intelligence, whereas a learning disability is linked to an overall cognitive impairment, reduced intellectual ability and difficulty with everyday activities. This disability affects someone for their whole life. A person with a learning disability might also have a learning difficulty or a mental health problem but these are separate. Example: a person with Down’s syndrome who is also dyslexic and has bouts of depression - Learning disabilities - ethical topic - GMC

It is important to note that everybody with a learning disability is an individual, with their own identifiable strengths, understood difficulties and unique experiences.

Autism

Autism is a spectrum condition and affects people in different ways. Autistic people may have other neurodivergent co-morbidities or autism may be a standalone diagnosis. Autistic people can have difficulty accessing timely healthcare due to diagnostic overshadowing, lack of understanding from healthcare professionals about normal autistic behaviours and expecting autistic people to communicate in a neurotypical fashion, for example contributing agitation to their diagnosis rather than pain or constipation, or asking for pain on a scale of 1-10. Autistic people are more likely to be overprescribed psychotropic medications and other high risk medications which may be inappropriate. Resources are shared below on supporting autistic people with their medical conditions including non-pharmacological options and how to reduce inappropriate over-prescribing.

For information on STOMP (Stopping Over Medication of People with a Learning Disability, Autism or Both) see below

Somerset Autistic Spectrum Service

Somerset Autism and ADHD Pathway for Children

Clinical guide for front line staff to support the management of patients with a learning disability and autistic people

NHS England have produced a Clinical guide for front line staff to support the management of patients with a learning disability and autistic people which is relevant to all clinical specialties and includes information on diagnostic overshadowing, healthcare passports, making reasonable adjustments and understanding behavioural responses to illness, pain and discomfort, as well as a number of other important considerations.

CQC: How you see me matters

Getting language right about Autism

The language we use to talk about autism is important. Listen to the person's own language. How do they describe their difficulties in identity? Do they refer to themselves as "an autistic person" or "a person with autism"? If you're unsure, ask, and use the identity-first language by default as the generally preferred option (autistic person).

NHS England » Making information and the words we use accessible has some great information under ‘Getting language right about autism' including top tips and language to use / avoid and why.

Involving people with a learning disability, autistic people and family carers

Oliver McGowan

The Oliver McGowan Mandatory Training on Learning Disability and Autism is named after Oliver McGowan, whose tragic death shone a light on the need for health and social care staff to have better training. The training aims to save lives by ensuring the health and social care workforce have the right skills and knowledge to provide safe, compassionate and informed care to autistic people and people with a learning disability.

Ask Listen Do

NHS England » Ask Listen Do: Oliver’s Story

Oliver's story shows us the importance of Ask Listen Do:

ASK people with a learning disability, autism or both, their families and carers for their opinion and concerns about treatment
LISTEN to all involved and show respect to those opinions and concerns
DO something about it and work in partnership with us

Ask Listen Do resources for people and families

Resources for autistic people and people with a learning disability
Top tips for family carers
Resources for families to use with schools
Ask Listen Do film for people and families

Ask Listen Do resources for organisations

Information booklet and checklist for organisations
Co-production guide using an Ask Listen Do approach
A training film for organisations
Oliver McGowan Mandatory Training is for all registered service providers and NHS healthcare staff can also access it through ESR (Electronic Staff Record)

Diagnostic Overshadowing

Diagnostic overshadowing means attributing any difficulties or changes in presentation to someone’s diagnosis and not considering other factors. This can have devastating consequences – for example, assuming an increase in someone’s aggressive behaviour is due to them having a learning disability and not looking any further to consider that they may be in pain. This can result in potentially missing serious physical health needs.

At the extremes, diagnostic overshadowing can result in failure to provide potentially lifesaving treatments based on assumptions that, due to their diagnoses, people do not have a good quality of life even if treated.

Stopping Over Medication of People with a Learning Disability, Autism or Both (STOMP)

Psychotropic medicines are more likely to be inappropriately prescribed to people with a learning disability or autism

STOMP stands for stopping over medication of people with a learning disability, autism or both with psychotropic medicines. It is a national project involving many different organisations which are helping to stop the over use of these medicines. STOMP is about helping people to stay well and have a good quality of life.

NHS England – Stopping over medication of people with a learning disability, autism or both (STOMP)

"Over-medication, and then lack of review, is a historic problem, but one that nobody knew the true scale of until recently. It is estimated that on an average day in England, between 30,000 and 35,000 people with a learning disability are being prescribed powerful drugs, with serious potential side effects, without clinical justification and for too long. This is often despite evidence-based alternative interventions being available. This inequality in care is unacceptable, and it is incumbent on clinicians and every other professional involved in an individual’s care to ensure they are acting in their patient’s best interest at all times."

Royal College of General Practitioners

See our Scorecard page for information on our scorecard indicator focusing on reducing the number of patients with learning difficulties and/or dementia that are prescribed antipsychotic medication but have no diagnosis of psychosis.

Mental wellbeing and emotional distress

It is estimated that 40% of people with a learning disability experience mental health problems (Mental health problems in people with learning disabilities: prevention, assessment and management) and research suggests autistic people may be more likely to experience depression than non-autistic people (Depression (autism.org.uk). Change in routine can have a big effect on people’s emotional and mental wellbeing. A hospital setting may make people with a learning disability and autistic people more anxious or lead to adverse behaviours, such as hurting other people, hurting themselves or damaging property. Do not assume that this is an indication of mental illness and do your best to work with the person who is unwell, their carer or family member to find out how best to keep them calm and relaxed.

For information on prescribing in mental health conditions see our Mental Health Prescribing page and for information on Mental Health services see the Somerset Mental Health and Learning Disabilities Commissioning Team page.

Learning from Lives and Deaths – People with a Learning Disability and Autistic People (LeDeR) Programme

The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme is a national programme that aims to make improvements to the quality of health and social care services for people with learning disabilities and autistic people. Somerset ICB are responsible for co-ordinating this programme and taking forward the actions from learning within Somerset. For more detail about the Somerset programme see Somerset ICB Learning Disabilities and Autism page.

It is important for the ICB to be informed when a person with learning disabilities has died. Anyone can do this including GPs, health and social care staff, family members, friends and carers. Visit the notify us, see how to do this by visiting the NHS LeDeR website and click on the link to report a death.

NHS Somerset: About the LeDeR Programme

We need to talk about death - NHS Somerset ICB

Current News