LeDeR, STOMP and annual health checks: the learning disability health duties in practice

People with a learning disability in England die, on average, many years earlier than the general population, and a large share of those deaths are avoidable. That is not a statistic to quote at a training day. It is the reason a set of duties exists that apply to learning disability services and to nobody else, and the reason an inspector will ask a registered manager to evidence every one of them.

The short answer

There are five learning disability specific health duties a service has to get right: notify and learn from LeDeR when someone dies, run STOMP so that nobody is on a psychotropic without a reason and a review, make sure every person aged 14 and over has an annual health check and a health action plan, keep a current hospital passport, and make reasonable adjustments under the Equality Act 2010. None of them is optional, all of them are evidenced through the care record, and most services can show you a policy for each and evidence for about two.

Why do people with a learning disability die younger?

People with a learning disability die younger mainly because of treatable conditions that are caught late or not at all: aspiration pneumonia, sepsis, constipation, epilepsy, and the consequences of long-term psychotropic medicines. The underlying cause is usually a system failure rather than the disability itself.

The recurring mechanisms are well documented. Diagnostic overshadowing, where a new symptom is put down to the person's learning disability or autism instead of investigated. Communication failure, where pain is never recognised because nobody wrote down what the person looks like when they are well. Missed screening and missed health checks. Delayed escalation, because staff did not have permission or confidence to push. And medicines started in a crisis a decade ago and never stopped.

All of those are things a well-run service can affect. That is the uncomfortable part and also the hopeful part.

The learning disability health duties at a glance

What is LeDeR?

LeDeR stands for Learning from Lives and Deaths, the national programme in England that reviews the deaths of people with a learning disability and of autistic adults, in order to find what could have been done differently and to act on it. It is a learning programme, not an investigation of blame.

Reviews are carried out by trained reviewers commissioned through integrated care boards. They look at the person's life and care in the period before death, at whether the death was avoidable, and at whether reasonable adjustments were made. Findings feed into local action and into national annual reports, which is where the recurring themes come from: constipation, aspiration, epilepsy, sepsis, delayed diagnosis, poor communication with families.

Services often meet LeDeR at the worst possible moment and know nothing about it. Learn it in advance. Put the notification route in your death and dying policy alongside the CQC notification and the coroner.

When and how do you notify LeDeR?

Notify LeDeR as soon as practicable after the death of any person with a learning disability, and of any autistic adult, ideally within a few working days, through the national LeDeR platform or your integrated care board's route. Anyone can notify, including the care service, the family, the GP or the hospital.

Do not assume someone else has done it. In my experience the hospital assumes the GP, the GP assumes the family, and nobody does it. The service that knew the person best should notify and should record the date and the reference on the person's file.

LeDeR sits alongside, not instead of, other duties. A death in a registered service still requires a CQC statutory notification, may require a safeguarding referral, may need reporting to the coroner, and may fall under the duty of candour. Our guide to CQC notifications sets out the thresholds and timescales for each.

What a LeDeR review asks, and how to prepare

A LeDeR reviewer will want the person's records for the period before death: health appointments, escalations, medicines, weights, bowel records, seizure records, communication information, hospital passport, and the service's own account of what happened. The quality of what you can hand over is decided months earlier.

The questions that come up again and again are these. When did staff first notice a change, and what did they do? Was the GP contacted, and what was the response, and did anyone escalate when nothing happened? Was there a hospital passport and did it go with the person? Were reasonable adjustments requested? Was pain considered? Was constipation monitored? Was the family kept informed and involved?

A service that records escalation properly, meaning who was called, when, what was said and what happened next, comes out of a LeDeR review well even when the outcome was terrible. A service whose notes say GP aware does not.

What to do with LeDeR themes in your own service

Do not wait for a death to use LeDeR. Take the national themes and turn them into audits you run every month, because those themes are a free list of the things most likely to kill the people you support.

The practical version looks like this: every person with a swallowing risk has a current SALT recommendation and a recorded IDDSI level, covered in our guide to dysphagia and IDDSI in learning disability homes. Every person has bowel monitoring with a threshold for action. Every person with epilepsy has a current seizure management plan and rescue medicine protocol. Every person has had an annual health check in the last twelve months. Every psychotropic has a review date. Every person has a hospital passport dated within a year. Nine checks, one page, monthly.

What is STOMP?

STOMP stands for stopping over-medication of people with a learning disability, autism or both with psychotropic medicines. It is an NHS England programme asking prescribers and services to make sure psychotropic medicines are only used where there is a clear clinical reason, at the lowest effective dose, with regular review and with non-drug alternatives properly tried.

The problem it addresses is large. Very large numbers of people with a learning disability are prescribed antipsychotics without a diagnosis of psychosis, usually started during a crisis and continued for years because nobody wanted to be the one to stop them. The equivalent programme for children and young people is STAMP.

STOMP is not anti-medication. Some people need an antipsychotic and do well on it. STOMP asks a simpler question: does this person still need this medicine, at this dose, for this reason, and who is checking?

Which medicines does STOMP cover?

STOMP covers psychotropic medicines, meaning anything prescribed to affect mood, thinking or behaviour. That includes antipsychotics, antidepressants, mood stabilisers, anxiolytics, hypnotics, and anticonvulsants where they are prescribed for behaviour rather than epilepsy.

In practice, the list on most people's records looks like this: risperidone, olanzapine, quetiapine, aripiprazole or haloperidol for behaviour; sertraline, citalopram or fluoxetine for low mood or anxiety; lithium or sodium valproate as a mood stabiliser; diazepam, lorazepam or zopiclone for anxiety or sleep; melatonin for sleep; and procyclidine to manage the side effects of an antipsychotic, which is a strong hint that the antipsychotic deserves a look.

Build a psychotropic register for your service: person, medicine, dose, route, indication as written by the prescriber, start date, who started it, last review date, next review date, and whether a reduction plan exists. If you cannot fill in the indication and the start date for someone, that is your first STOMP conversation.

How do you run a STOMP review in a service?

A service does not reduce medicines, prescribers do, but the service holds the information that makes a good review possible. Your job is to arrive at the appointment with evidence rather than impressions: what the medicine was started for, what has happened since, what non-drug support is in place, and what side effects you are seeing.

Bring these to every psychotropic review:

• The indication as originally recorded, and whether that reason still applies
• Incident and ABC data for the target behaviour over at least three months, with frequency and severity, not adjectives
• The current positive behaviour support plan and what has changed in it
• PRN psychotropic use: how often, what for, and whether it worked
• Physical monitoring: weight, BMI, waist, blood pressure, blood glucose or HbA1c, lipids, prolactin where relevant, and any ECG
• Observed side effects: sedation, drooling, tremor, stiffness, restlessness, weight gain, constipation, menstrual changes
• The person's own view, gathered in whatever way they communicate
• What the family think, recorded as their words

Good data changes prescribing decisions. A psychiatrist looking at three months of ABC charts showing that incidents cluster on the two days a particular worker is not on shift will draw a different conclusion from one who is told he has been unsettled. Our guides to ABC charts and PBS plans cover how to gather that evidence.

Marcus: an antipsychotic that outlived its reason

Marcus, 34, has a severe learning disability and is autistic. He was prescribed risperidone 2mg twice daily at 19, after a placement breakdown, and had been on it for fifteen years. Nobody in the current service knew why. His weight was 104kg, he drooled, he slept most afternoons, and his prolactin had never been checked.

The service built the picture: no diagnosis of psychosis in any letter, no recorded target behaviour, no review in four years, incident data showing three physical incidents in six months, all at transitions between activities. They took that to the GP and asked for a psychiatric review under STOMP.

The reduction took fourteen months, in small steps, with a written plan, agreed relapse indicators and a rule that nothing changed in the two weeks either side of a step. He came down to 1mg twice daily and stopped altogether four months later. He lost 11kg, stopped sleeping in the afternoons and started using his communication book again. Incidents did not increase, because the transitions work in his PBS plan had been strengthened first. That last point is the whole trick: reduce the medicine and improve the support at the same time, never the first without the second.

Reducing psychotropics safely

Withdrawal has to be slow, planned and monitored, because stopping an antipsychotic too quickly can cause rebound symptoms, withdrawal-emergent movement disorders and a relapse that gets blamed on the person rather than the process. A typical plan reduces in small increments with weeks between steps, and pauses at any sign of deterioration.

The service's part of the plan should be written down before the first reduction: what we are watching for, who records it daily, what counts as a concern, who we call, and what would make us stop. Agree relapse indicators in advance and in observable terms, because after a reduction everybody starts attributing every bad day to the medicine change.

Two practical rules. Change one thing at a time, so a medicine reduction does not coincide with a new staff member, a house move or a change of day service. And record more, not less, during a reduction: daily mood and sleep, incident counts, appetite, and anything the person says or signs about how they feel.

What is an annual health check and who gets one?

An annual health check is a yearly appointment at the GP practice for everyone aged 14 and over on the practice's learning disability register. It is more thorough than an ordinary appointment, it is free, and it should produce a health action plan the person keeps.

It exists because people with a learning disability are less likely to raise symptoms, less likely to attend screening and more likely to have conditions found late. The check is a deliberate search for problems rather than a response to a complaint, which is exactly why it saves lives.

The service's responsibilities are practical: make sure the person is on the register, make sure the appointment is booked, prepare for it, go with the person or make sure someone who knows them does, and chase it when it does not happen. A missed annual health check should sit on a manager's overdue list, not disappear.

What should the annual health check cover?

A good annual health check covers physical examination, weight and BMI, blood pressure, a full medicines review, epilepsy, mental health and behaviour, continence, bowel habit, swallowing, vision, hearing, dental health, sexual health, screening and vaccinations, syndrome-specific risks, and the person's communication needs.

Prepare for it. Take along the weight chart, the bowel record, the seizure diary, the psychotropic list with review dates, the communication passport, and a short list of the three things the staff team are worried about. Ask specifically about the checks that get skipped:

• Thyroid function for people with Down's syndrome, who have a high rate of thyroid disease
• Hearing and vision, which are frequently undetected and frequently mistaken for deterioration in communication
• Cervical, breast, bowel and abdominal aortic aneurysm screening, which people with a learning disability are much less likely to receive
• Bowel habit and constipation, with an actual question about frequency and consistency rather than a yes or no
• Reflux and Helicobacter pylori, which are common and often silent
• Bone health, especially for people on anticonvulsants or with limited mobility
• Dysphagia and any recent chest infections
• Epilepsy control, rescue medicine, and whether a SUDEP conversation has happened

Getting people onto the GP learning disability register

A person who is not on the practice's learning disability register will not be invited for an annual health check, will not get the reasonable adjustment flag and may be missed by targeted screening. Getting them on it is a five-minute task that services skip for years.

Write to the practice, ask for the person to be added to the learning disability register, and ask for the reasonable adjustment flag to be set with the specific adjustments they need. Keep the letter and the reply. If the practice declines, ask why in writing, because a diagnosis of a learning disability from any credible source is normally enough, and inclusion should not depend on a formal IQ assessment from decades ago.

Check the register status at every admission to your service, and record it as a field on the person's profile with the date confirmed. It is the sort of thing a decent learning disability care management platform should prompt on rather than leave to memory.

Health action plans

A health action plan is the person's own list of what needs to happen about their health, who is doing it and by when, produced from the annual health check and ideally written in easy read with pictures. It belongs to the person, not the file.

Most health action plans I see are useless, because they say things like continue current medication and maintain healthy diet. A usable one says: Jordan will see the dentist by 14 March, keyworker to book. Jordan will have his blood pressure checked every three months at the practice. Jordan will try walking to the shop twice a week, recorded in his daily notes.

Every action needs an owner and a date, and the plan needs a review before the next check rather than a dusting off the week before. Hold it in the same place as the care plan so the actions appear as tasks rather than as a PDF nobody opens.

Jordan: a health action plan that did something

Jordan, 29, has cerebral palsy and a moderate learning disability. His annual health check produced four actions: a dental appointment, a review of his reflux medicine, a bowel management plan, and a referral about his shoulder pain.

The service turned each into a task on his record with an owner and a due date, and put them on the weekly house meeting agenda. Three were done within six weeks. The fourth, the orthopaedic referral, took three chasing letters and eventually a complaint, and the record of those chases was the reason it happened at all.

At his next annual health check his GP had a one-page progress note showing what had been done. That is a different conversation from arriving with nothing, and it changes how the practice treats the service. The point is not paperwork. It is that health actions for people who cannot chase their own care only happen if somebody owns them, by name, with a date.

Hospital passports

A hospital passport is a document that tells hospital staff how to treat this person safely: how they communicate, how they show pain, what they need help with, what frightens them, their medicines, and what a reasonable adjustment looks like for them. It should be current, short, and impossible to ignore.

Keep it generated from the same record as everything else, because the commonest failure is a hospital passport that was typed two years ago and no longer matches the medicines or the IDDSI level. Send it with the person, hand it to a named nurse rather than leaving it in a bag, and record who you gave it to.

Then follow up. Send a support worker who knows the person for the first hours where you can, ring the ward daily, and ask directly whether the passport has been read. Our guide to hospital passports covers the format and the update routine, and the communication passport should sit on its front page.

What are reasonable adjustments under the Equality Act 2010?

Reasonable adjustments are changes that service providers must make so that disabled people are not placed at a substantial disadvantage. Under the Equality Act 2010 the duty is anticipatory, which means health services must plan for disabled people in general, not only respond when an individual asks.

For someone with a learning disability that usually means adjustments to how, when and where care is delivered rather than to the treatment itself. Common ones that work:

• A double or triple-length appointment, so there is time to explain and to wait for an answer
• The first or last appointment of the day, avoiding a crowded waiting room
• Waiting somewhere quiet, or in the car with a phone call when it is time
• Desensitisation visits, where the person visits the clinic several times before anything is done
• Easy-read appointment letters and easy-read information about the procedure
• A named member of staff who knows the person present throughout
• Bloods taken at home, or with numbing cream applied an hour before
• Admission to a side room, with a familiar support worker staying
• Flagging the record so every clinician sees the adjustments before the appointment

Ask in writing and keep the reply. Where an adjustment is refused or simply not made and the person suffers for it, that is a complaint with a legal basis, and it is also the sort of thing a LeDeR review will ask about.

Diagnostic overshadowing and how to write against it

Diagnostic overshadowing is when a physical health problem is wrongly attributed to a person's learning disability or autism, so that pain becomes behaviour and illness becomes a phase. It is one of the main reasons people in this group die of treatable conditions.

You cannot stop a clinician doing it, but you can make it much harder, and the tool is the record. A referral that says he has been aggressive invites overshadowing. A referral that says he has been holding his right jaw, has stopped eating on that side, has lost 3kg in six weeks and has had four nights of disturbed sleep, against a baseline where he hums while being dressed, does not.

Train staff to write physically. Change from baseline, measured where possible, with dates. The communication passport supplies the baseline, the daily notes supply the change, and the escalation record supplies the proof that you asked.

Constipation, epilepsy and the deaths that keep repeating

Two causes of death appear in LeDeR reviews so often that every learning disability service should have a standing system for them: constipation and epilepsy. Both are manageable and both kill people in services every year.

For constipation, record bowel movements for everyone at risk using a consistent scale such as the Bristol stool chart, set a threshold for action in the care plan, usually no movement in three days, and write what happens at that point, including who reviews laxatives. Risk factors are everywhere in this population: reduced mobility, low fibre and fluid intake, anticholinergic and antipsychotic medicines, and an inability to report abdominal pain. Do not treat a bowel chart as a tick sheet. Somebody has to read it.

For epilepsy, hold a current seizure management plan naming the seizure types, the usual pattern, the rescue medicine and route, for example buccal midazolam 10mg, when to give it, when to call an ambulance, and the recovery routine. Keep a seizure diary that records type, duration, time, injury and recovery, because a change in pattern is the thing that triggers a neurology review. Discuss SUDEP openly with the person and family and record that conversation.

The Oliver McGowan training requirement

The Health and Care Act 2022 requires CQC-registered providers to ensure their staff receive learning disability and autism training appropriate to their role, and the Oliver McGowan Mandatory Training is the standardised programme for it. Tier 1 is for staff who may have contact; Tier 2 is for those who provide care and support.

For a learning disability service, Tier 2 is the relevant level for care staff, and the training includes co-delivery by people with lived experience. Get it on the training matrix with a tier and a date for every person, including bank staff, and treat it like any other mandatory expiry.

Inspectors do ask about this, and they ask in the same breath as they ask about STOMP and annual health checks. A training matrix that reports by tier and expiry, rather than a spreadsheet updated when someone remembers, is the kind of thing care compliance software should generate on demand.

How do you audit learning disability health across a service?

Audit it as a single monthly page with one line per person and a yes or no in each column, because the point is to find the gaps, not to write a report. Nine columns cover almost everything that matters.

Those columns are: on the GP learning disability register; annual health check within twelve months; health action plan with live actions; hospital passport dated within twelve months; psychotropics listed with indication and review date; physical monitoring done for anyone on an antipsychotic; bowel monitoring in place where indicated; epilepsy plan current where relevant; and reasonable adjustments recorded and requested.

Track the totals month by month and put them in the provider's governance report. A service that can show the proportion of people with a health check in date rising from 60 per cent to 100 per cent over two quarters is demonstrating something real. Holding those fields as structured data rather than in documents is the difference between running that report in a minute and spending a day on it, which is what good care planning systems are for.

Common mistakes

• Assuming somebody else has notified LeDeR.
• Recording GP aware instead of who was called, when, what was said and what happened next.
• A psychotropic list with no indication and no start date.
• Asking for a medicine reduction without strengthening the support at the same time.
• Reducing a medicine at the same time as a staff change or a house move.
• Letting an annual health check slip because the practice did not invite the person.
• A health action plan full of verbs with no owners and no dates.
• A hospital passport typed two years ago that no longer matches the medicines.
• Requesting reasonable adjustments verbally and keeping no record.
• Bowel charts that are completed and never read.
• Describing behaviour in referrals instead of physical change from a baseline.

What good looks like on inspection day

An inspector asks how the service knows nobody is over-medicated. The manager opens the psychotropic register: every person, every medicine, the indication as the prescriber wrote it, the start date, the last review, the next review and whether there is a reduction plan. They show Marcus's fourteen-month reduction with the relapse indicators and the incident data either side of it.

The inspector asks about annual health checks. The manager shows the monthly health audit with every person's check date, the two that are overdue, the letters chasing them and the dates the practice was contacted. They show Jordan's health action plan with four actions, three completed with dates and one escalated to a complaint.

The inspector asks a support worker how they would know if someone was in pain. The worker describes Priya's baseline and the three things that changed before her abscessed teeth were found. The inspector asks about training and the matrix shows Oliver McGowan Tier 2 for every member of care staff, with dates. That is the evidence inspectors look for, and it is all a by-product of running the service properly rather than a folder assembled for the visit.

Final conclusion

The learning disability health duties are not paperwork on top of care. They are the care. Notify LeDeR and run your own after-death review whether or not anyone asks. Build a psychotropic register and go to every review with data instead of adjectives. Get everyone on the GP register, get the annual health check done, and turn the health action plan into tasks with names and dates. Keep the hospital passport current and hand it to a named nurse. Ask for reasonable adjustments in writing and record whether they happened. Then audit the lot on one page every month, because the difference between a service that does this and one that does not is measured in years of people's lives.

Frequently asked

What is LeDeR and who notifies it?

LeDeR is the Learning from Lives and Deaths programme in England, which reviews the deaths of people with a learning disability and of autistic adults to find what could have been done differently. Anyone can notify, including the care service, the family, the GP or the hospital, and the service that knew the person best should do it and record the date and reference.

What does STOMP stand for?

STOMP stands for stopping over-medication of people with a learning disability, autism or both with psychotropic medicines. It asks prescribers and services to make sure psychotropics are used only where there is a clear reason, at the lowest effective dose, with regular review and with non-drug alternatives properly tried.

Who is entitled to an annual health check?

Everyone aged 14 and over who is on their GP practice's learning disability register is entitled to a free annual health check. It should be more thorough than an ordinary appointment and should produce a health action plan the person keeps. Services should check register status on admission and chase the appointment if it is not offered.

What should a care service bring to a STOMP review?

Bring the indication the medicine was started for, the start date, at least three months of incident and ABC data with frequency and severity, the current PBS plan, PRN psychotropic use and whether it worked, physical monitoring results including weight and blood tests, observed side effects, and the views of the person and the family.

What are reasonable adjustments under the Equality Act 2010?

They are changes services must make so disabled people are not placed at a substantial disadvantage, and the duty is anticipatory rather than reactive. For people with a learning disability they usually mean longer appointments, quiet waiting, desensitisation visits, easy-read information, a familiar person present and a flag on the medical record.

What is diagnostic overshadowing?

Diagnostic overshadowing is when a physical health problem is wrongly attributed to a person's learning disability or autism, so pain is recorded as behaviour and illness is treated as a phase. Services reduce it by recording measurable change from a described baseline, with dates, rather than describing behaviour.

Is Oliver McGowan training a legal requirement?

The Health and Care Act 2022 requires CQC-registered providers to ensure staff receive learning disability and autism training appropriate to their role, and the Oliver McGowan Mandatory Training is the standardised programme. Tier 1 is for staff who may have contact and Tier 2 for those providing care and support.

How quickly should a service act on constipation?

Set a threshold in the care plan, commonly no bowel movement in three days, and write down exactly what happens at that point, including who reviews laxatives and when a GP is called. Record consistency using a scale such as the Bristol stool chart, and make sure somebody reads the chart rather than only completing it.

Sources

• NHS England: Learning from Lives and Deaths (LeDeR) programme and annual reports
• NHS England: Stopping Over Medication of People with a learning disability, autism or both (STOMP)
• NHS England: annual health checks for people with a learning disability and the learning disability register
• Equality Act 2010, including the anticipatory duty to make reasonable adjustments
• Health and Care Act 2022 and the Oliver McGowan Mandatory Training on Learning Disability and Autism
• NICE guideline NG11: Challenging behaviour and learning disabilities
• Care Quality Commission: Right support, right care, right culture, and statutory notifications
• Royal College of Psychiatrists: psychotropic prescribing for people with intellectual disability