LD Conference - a summary for practices
Date sent: Thursday 15 June 2017
Recently the LMC held a very successful conference with over 120 delegates with the aim of raising the profile of learning disabilities, significantly increasing the uptake of Learning Disability Annual Health Checks, to encourage the practices that do not currently provide the service to think again! In addition we thought it would be helpful to provide some resources and some general information about issues that are relevant to this vulnerable group of people.
A Conference like this does not just happen and I would like to that the LD Team in Southern Health and the local CCGs who worked with the LMC to develop the agenda, secure the speakers and ensure the success of the event.
Although this event was held in Hampshire there are significant resources contained within this email which are relevant to all GPs and so I have sent this to all GPs, Practice Managers and Practice Nurses in Wessex.
Learning Disabilities (LD)
There are over 350,000 people in the UK with severe LD and about 900,000 adults with LD ranging from mild to severe. An average practice of 8,000 patients could expect to have about 50 - 100 people with LD.
It is well recognised that people with LD experience poorer health and have a shorter life expectancy (this equates to about 14 years less for a male and 20 years less for a female). The mortality for patients with moderate or severe LD is three times greater than the general population. This group also access to healthcare is less good than their peers.
People with LD often have complex physical and mental health needs and conditions such as epilepsy, mental health problems, dementia, diabetes, obesity, cardiovascular disease and osteoporosis are all more prevalent than in the general population.
The NHS has recently focused on the services provided to this vulnerable group and following recent media coverage there has been greater scrutiny when a premature death occurs in a person with LD.
Recently the LMC held a conference focusing on supporting practices to provide a better service to their patients and also protect general practice in cases of premature death, especially if the death has been reported to the Coroner.
The Directed Enhanced Service (DES) for Learning Disabilities Health Check Scheme was designed to encourage practices to identify all patients aged 14 and over with learning disabilities, to maintain a learning disabilities 'health check' register and offer them an annual health check, which will includes producing a health action plan.
The patients who are eligible are those who are on the practice register and known to Social Services. This can be difficult as Social Service have in the passed refused to share this information. If you talk to your CCG or LD Health Facilitator they can help your with this.
Locally there are a small number of practices who do not provider this service.
It is worth remembering that there was an annual fee of £116 that has now been increased to £140 per client per year. On average it is estimated that the annual review takes about 30 minutes of nurse time and 30 minutes of GP time, although many practices provide a largely nurse led service with the GP focusing on the medication review.
In Hampshire the current uptake of LD Annual Health Checks is about 44% with a range of 0% to 96%. The NHS has set a target of 75% for CCGs.
I would hope this year in Wessex we could achieve a target of closer to 80%.
There are significant benefits to the individual, their family or carer and their GP/practice if these annual reviews are completed. In addition there are frequently long term condition (LTC) and QoF areas that can be covered during the review.
It is often helpful to have a lead GP and Nurse within the practice for LD.
Click here for an interview with Amy George – LD Strategic Health Facilitator and Dr Nigel Watson.
Below is a proposed plan that a practice could use with the links to available resources.
1. Decide who will undertake the review and whether this is undertaken in the surgery or at home.
Often it is easier to perform the annual review at a person’s care home if they are a resident and in the surgery if they live with a relative or is a small supported unit.
2. Get as much information as you can before the review.
People with LD often don’t understand what might be involved and communicating this an easy to understand way with pictures may be helpful
Getting ready for my health check - click here.
Send a pre health check questionnaire – click here .
The hospital passport is a very useful way to share the individual’s personal information - click here.
3. Arrange a blood test about a week before the annual health review – this is not appropriate for all – you need to take a “best interest” decision for those who may not have the capacity to consent to a blood test.
It is worth doing a FBC, U&Es, LFTs, TFTs, Glucose and HbA1c and if indicated Lithium levels, anti-epileptic drug levels, Calcium and Vitamin D (esp. if on anti-epileptic drugs).
4. The annual review should be based on the Cardiff Health check.
Emis & Vision are working towards making the LD template available by 26th June. System One is not far behind, working hard for launch the following week at the end of June or first few days in July. Therefore all GPs should be able to access and use the LD AHC template via their systems by early July
- RCGP has published the new Step-by-Step guide in the form of a toolkit – this 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.
- The Health Check Guide for Families and paid carers was also launched yesterday.
This would normally include:
- Height, weight, BMI, alcohol and smoking status
- A review of systems - CVS, respiratory, GI, CNS etc.
- Ask about an mental health or behavioral problems
- Review medication
- Discuss screening – esp. bowel, cervical and breast (see below for more information)
- Physical examination would include
- Pulse, BP and heart sounds
- Ears and Eye - deafness more come esp. in Down's Syndrome (50%), cataracts and glaucoma are more common.
At the end of the check give the patient a simple list of issues you and the practice nurse have identified, action and keep in the notes.
- My health needs
- What needs to done?
- Who will help me?
- When will this need to be reviewed?
Top tips for practice for who patients with a learning disability DNA their Annual health Check
- Check where and who the person lives with.
- Contact the person or parent/ carer to find out why they did not attend the appointment and whether there is anything that can be done to facilitate next appointment (Consider reasonable adjustments).
- Re-Arrange the appointment
- Send a letter to confirm the date, time and venue of the appointment (In accessible format if required), email or text.
- Send accessible Annual Health Check (AHC) information (MENCAP; see the link) so the person is aware what AHC entails (Previous reports suggest that some DNA’s happened due to person’s lack of understanding of what to expect.)
- Phone the person about the appointment a few days before and/or on the day of the appointment to remind them again
If the person DNA again
- Consider if the person has a mental capacity to refuse this or if this has been refused by the support
- If the person has the capacity to refuse AHC, this must be recorded and ideally flagged up so when/if the person attends a routine appointment for other reasons, AHC can be discussed in preparation of next invitation
- If the person age 18 years and above lacks capacity to refuse the AHC, follow the best interest decision making proces
- If you do not know whether the person lacks capacity, investigate this.
- Consider contacting Adult Services if you have concerns related to the care of the person with a learning disability including the refusal to attend AHC by the parent/ carer as this may be a Safeguarding issue.
- Contact your local Health Facilitator to discuss
To encourage an uptake of Annual Health Checks you may also wish to consider:
- Is reception staff aware that the Practice offers LD annual health checks and how long should the appointment be made for?
- Is the Cardiff/ Welsh AHC template sent to patients prior to their appointment which can make them anxious and therefore they don’t engage?
- Is the patient relying on others to get them to the appointment?
- Is the patient a carer for an older relative?
- Does the patient ‘refuse to miss’ their day service/work? How can this be managed?
Some additional resources to help you click here click here.
Do not assume just because a person has a learning disability that they are not sexually active. The uptake for women with LD is very low. Consider if the patient has the mental capacity to understand why is involved. Consider the patients bests interests if in doubt seek help from the LD Team.
A helpful leaflet - having a smear what is it all about click here .
This is offered to women age 50 or more, in the past it may have been difficult to actually perform the mammogram because of physical disabilities but this should no longer be a restriction with modern machines. If the individual lacks capacity to understand consider using the the best interest guidelines.
My boobs and me is another excellent leaflet - click here .
The screening is the first part but remember if the test is positive then the individual would be need to understand, be able to co-operate and undergo a colonoscopy. This is one of the few screening test where a person can die as a result of screening (perforated colon etc.)
A helpful leaflet - click here.
Equality law recognises that bringing about equality for disabled people may mean changing the way in which services are delivered, providing extra equipment and/or the removal of physical barriers.
This is the ‘duty to make reasonable adjustments’
This could include:
- Longer appointments
- Early or late appointments
- Home visits
- Accessible information
The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand and with support so they can communicate effectively with health and social care services.
- Hearing – have you got a hearing loop?
- Often seen with carer
- Attention span
In last 18 months there have been preventable deaths of adults with learning disabilities in Hampshire:
- All died from choking
- All were know to have dysphagia
- All had eating and drinking guidelines in place which were not being followed by carers
Two minutes of a consultation could prevent a death!
What should we do? Flag the records if the person has dysphagia
Ask these 3 questions of carers:
- Are you aware the patient is at increased risk of choking and aspiration and has specific speech and language recommendations for eating and drinking?
- Are you and your team following the eating and drinking guidelines?
- Has there been a change in the ability to eat and drink?
If the answer is no to the first two, reinforce the needs to follow the guidelines. Consider referral to the LD Team.
Epilepsy and LD
About 1/3 of people with LD have epilepsy. The prevalence is higher in those with severe LD. Those with stable epilepsy can be managed by their GP and those who need more specialist should be referred to the LD team or neurologists depending on local policies. For those discharged from specialist care there should be clear guidance on when to re refer.
Circumstances on when to re refer:
- Seizures become more uncontrolled than the current frequency and severity
- Diagnostic uncertainty over seizures
- Treatment failure
- There are, or risk of, unacceptable side effects from treatment
- There is psychological and/or psychiatric co-morbidity
- Risks are not currently managed
- Requires regular rescue medication
- Night time seizures
- Monitoring equipment to minimise the risk from epilepsy and seizures not currently in place
- Treatment withdrawal is being considered
- Any change in seizure activity that is unusual, whether this be an individual seizure or general picture of their epilepsy
Rectal diazepam is no longer used and has been replace by buccal midazolam.
Stopping Over-Medication of People with Learning Disabilities (STOMP)
STOMP is a national health campaign to stop the over-use of psychotropic medication to manage people’s behaviour.
It is estimated that on an average day in England, between 30,000 and 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical indications (psychosis or affective/anxiety disorder). A substantial proportion of people with a learning disability who are prescribed psychotropic drugs for behavioural purposes can safely have their drugs reduced or withdrawn.
Other resources that might be of interest
ABCD Checklist for practices - developed by people with LD - click here
Easy health - lots of resources about food and diet, health promotion, a video resource and use web links - click here .
Surrey Health action plan - aimed at people living in Surrey but much of the resources are equally relevant to Hampshire residents. - click here .
McMillan Cancer services - this is an easy read version of their leaflet - click here.
The University of Herefordshire has produced a guide called understanding intellectual disability and health - click here .
Supporting & meeting the needs of people with Profound & Multiple Learning Disabilities - a useful leaflet produced by NHS England - click here .
People with learning disabilities are more likely to have sight loss and less likely to get the help and support they need - click here.
The Government produce detailed information and statistics about people with a learning disability and the support available to them and their families - click here .
The British Institute for Learning Disabilities - click here.
A Picture of Health is an NHS Resource to helps clinicians prove easy to read information to people with learning disabilities - click here .
Learning Disability Friendly Practice
This is an excellent initiative nd led by the Transforming Care Project (TCP) across Hampshire. There are criteria set in order to achieve the award.
This entails an action plan/up to date training/validation of LD registers and evidence of making reasonable adjustments.
If your practice is interested, contact Louise Osborne - email@example.com
Useful Contacts in Hampshire
East Hants Locality
•Havant and East Hants LD Team Tel:02392 441417
•Fareham and Gosport LD Team Tel:01329 316350
North Hants Locality
Community Team LD Team: 02382 310 300
West Hants Locality
•New Forest LD team: 02380 383444
•Eastleigh LD Team: 01329 316 226
Dr Nigel Watson
Churchill House, 122-124 Hursley Rd
Chandler's Ford, Eastleigh
Hants. SO53 1JB (Registered Office)
Attached file: CS41976 Health Facilitator A5 leaflet.v10.pdf
Attached file: Adult Health NHS Screening Programmes hampshirepdf FINAL.pdf