Learning disabilities and health - Information for professionals

Here is a list of some of the more common learning disability conditions and the comorbidities / common health conditions that are associated with these.

• Key Health Issues for specific disabilities (DOCX 15kb)

Good communication is key in reducing health inequalities for people with learning disabilities. Remember that most of the communication received is non verbal, so if you apprehensive in your communication, this could impact their ability to accept investigations and treatment from you. Here is a 10 Tips for Communication with adults with LD.

• 10 tips for communication with adults with LD (PDF 314kb)

Here is a video we have created to help understand how you can communicate more effectively with your patients with a learning disability.

Helping someone feel relaxed is also key to being able to communicate. Some surgeries now offer a sensory box and Time Out Cards for people with additional sensory needs to help them overcome their barriers. Here is a list of sensory box ideas and template time out cards.

Some people struggle to understand the importance of health interventions and may show their fear, refusal, distress through behaviours that put themselves and others at risk of harm.

It is important to pre-empt this and work with those that support the person to create a protocol that reduces / eliminates those risks to your team and others within the practice but also ensures the person is able to have their health needs met.

 Please use this template protocol and work with those supporting the person to collaborate on this. If you need support please do liaise with the community learning disability nurses to help create this protocol.

There is no learning disability diagnostic service in Hertfordshire and the decision as to whether a patient has a learning disability is a clinical decision for the GP.

The National inclusion tool (.doc 368KB) can be used to help identify if the person meets the criteria.

You can also contact the learning disability nursing service to see if the social care records have any information to aid the decision

It can be challenging to identify if a person has a learning disability or a learning difficulty and often the terms are used incorrectly in historical information from childhood. Here is some information about the difference between learning difficulty and learning disability to aid your decision (.doc 398KB).

This is Hertfordshire’s health passport.

The Purple Folder has been reviewed by health professionals across Hertfordshire and rewritten. The new Version aims to provide health professionals essential information regarding recent medical appointments, to enable the practitioner to build a health picture and will give details of reasonable adjustments required, the person’s baseline communication, appearance and behaviour in order to establish changes and reduce diagnostic overshadowing.

Short training video for health professionals on using the new Purple folder

If a patient does not have the New Version please notify purplefolder@hertfordshire.gov.uk

• Information for patients.
• Purple Folder Poster for surgeries (DOCX 373kb)
• Purple Folder - Guidance for health professionals (PDF 260KB)

 The Annual Health Check [AHC] aims to reduce delayed diagnostics through a top to toe annual check.  The expectation  is to reach 75% of your learning disability patients but Nationally there is a push to reach your Hard to Reach patients who probably form the remaining 25% who frequently don’t attend. Our support aims to help your practice to deliver quality AHCs and also help reach your hard to reach patients.

Inviting

Hard To Reach – When your practice has tried all means of communication and patients remain hard to engage with you can link with the LD Hard to Reach Nurse for support to overcome the barriers for those patients. Email healthequalitynursing@hertfordshire.gov.uk

 Decliners – All decliners should also have evidence recorded that they had capacity to make this decision (and it wasn’t the decision of the people who support them.) You can use the Annual Health Check Decision to Decline form to help with this. Here is an example of a completed Annual Health Check Decision to Decline form.  If it was not the patients decision a clinical best interest decision is needed. We can support someone in the practice with this. Email  healthequalitynursing@hertfordshire.gov.uk

The Collaborative approach (PDF 100KB) – Quality AHCs are based on a good collaborative approach between patient, surgery, those that support the person and all the additional LD nursing tools and services we offer.

The Annual Health Check

Top Tips Checklist for Quality AHC We appreciate that some practices use other clinicians to carry out some aspects of the AHC. All AHCs must be signed off by a clinician and the essential components such as the Physical examination must be carried out by qualified clinicians. To help other clinicians deliver a quality AHC we have collaborated with the ICB Learning Disability Lead GPs to create this Top Tips List of key areas of health that are know areas of delays in diagnosis for people with learning disabilities.

The Annual Health Check Preparation Form  (DOCX 1.53MB) and the Under 18s prep form (PDF 607KB) is a way of gathering the key information prior to the face to face appointment. You may want to use this for everyone so you can pre plan the face to face and triage the key areas for discussion. You may want to just use for people who struggle with lengthy face to face appointments as a reasonable adjustment to enable you to plan and reduce the face to face appointment and still be able to identify any health changes requiring action without putting the person through the anxiety of a lengthy appointment.

Easy-read AHC Checklist (PDF 638KB) This tool is a way of ensuring the person is as involved as possible with their own health. Everyone to some degree will be aware of changes, this can help them engage to their best ability.

Health Check Action Plan

The action plan is a requirement at the end of the AHC – this should be printed [coded to show it has been done] and put in the Persons Purple Folder – make sure each action has a clear timeframe and responsible person

Stay Healthy at Home Checklist (PDF 980KB)  and under 24s stay healthy at home checklist (PDF 699KB) This is a tool that can be printed and given to everyone as part of their Health Check Action Plan. The aim is to help people and those that support them to be more health aware all year around and learn how to spot early signs of health changes.  

Minimum standard information for your practice (PDF 172KB) it is recommended that the Stay healthy at home checklist  is given as a Minimum standard.

Accessible information Standard [2016] requirements. We have created a grid (XLSX 16KB) for the learning Disability communication lead person at the surgery to use to collate the knowledge of how to reach these patients and key communication information. This is just something that may be helpful to help reduce the risk of core information known by one key person being lost if they left. It also helps meet the requirements of the accessible information standard as it is a requirement to have this information  flagged on your systems to ensure all clinicians can equally offer the same communication approach and reasonable adjustments to reduce avoidable delays in diagnosis and treatment. We can support with this.

Any help needed – contact us PurpleStarStrategy@hertfordshire.gov.uk We are always looking to improve the process and our support  please can you fill in our feedback form. 

Other useful Links and Tools

template easyread letter (DOCX 978KB)  you can adapt and use to invite people for their annual health check.

Sharing your preferred communication information and Reasonable adjustments (DOCX 2MB) can be used to gather patients Accessible Information Standard and Reasonable adjustment Required information

Annual Health Check Poster for surgeries (DOCX 1.17MB)

background grid of communication and reasonable adjustment needs.

annual health check using a preparation form. Training video

Check it out! - YouTube - video omfor patients with an LD checking your body and what to do if you notice any changes. 

Many people with a learning disability struggle to tolerate blood tests or in practice health investigations and this leads to delays in diagnosis and treatment.

It is essential that mental capacity to understand the risks of not having the blood tests / investigation is checked and then the requesting clinician needs to consider what level of restriction would be needed to attain the bloods / investigation  and whether the risk of not having the bloods/ investigation  outweighs the risk of these restrictions that would be needed. Watch Gavins Short Video of his experience re Bloods and capacity.

We have created a pathway and form for Blood tests (DOC, 88KB) 

And a pathway and Form for practice level investigations and treatment (DOC, 99KB)

The Community Learning Disability Nurses under ACS can receive Step Up referrals for support with this 

All people on your learning disability register should be offered the flu vaccine. If the injection is refused by the patient, nasal spray should be given off licence. Display the Get your free flu jab poster in your surgery.

You can invite your patients to have the jab with this easy read flu invitation (PPT 568KB), but check their preferred communication method and make reasonable adjustments.

Share these resources with your learning disability registered patients:

• Easyread patient leaflet - Protect yourself from flu
• Video - Flu vaccinations for people with a learning disability
• Video - Flu vaccinations for carers of people with a learning disability

People with a learning disability are also entitled to the pneumococcal vaccine. You could send this easy read and information to the patients on your learning disability register: Easy read guide to the pneumococcal vaccine’

Reducing the overuse of psychotropic medication in people with Learning Disabilities is a National target.

As GPs it is very challenging to be able to fully assess the potential lifestyle factor risks of reductions. Family and carers will often be reluctant for mediocation changes for fear of ‘rocking the boat.’ The STOMP nurse carries out a full risk assessment and works with the person, family and carers to assess the risks and support needed if a reduction is considered clinically in their best interest.

The STOMP nurse will also support with these home life risk assessments before commencing reductions where psychiatry recommend reductions 

Here is a quick flow chart of how the STOMP nurse will work to support a comprehensive medication review with risk and benefit analysis.

Here’s a detailed summary of the process.

Watch this STOMP video to hear a parent explain the impact STOMP nursing had on her and her adult son.

You can refer to Stomp@hertfordshire.gov.uk

• Breast Checking Information

• Breast Screening Information
  

Contact the Health Equality Nurse to support anyone on the LD register who has missed or refused / declined a breast screening

www.hertfordshire.gov.uk/LDbreastscreen

 healthequalitynursing@hertfordshire.gov.uk

• Constipation is one of the identified leading causes of avoidable death in people with a learning disability –  View our 'know your poo' guides and easy use bowel recording charts

• Bowel Screening easyread information - contact the Health Equality Nurse to support anyone on the LD register who has missed a bowel screening

www.hertfordshire.gov.uk/LDpoocheck

healthequalitynursing@hertfordshire.gov.uk

We have created tools and a pathway to cervical screening for your practice nurses.

Heres is the Cervical Screening Decision Process Tool (DOCX 67.9kb)

Here’s the Cervical Screening Decision Pathway to go with the Tool.

There are links within this to all our tools.

We delivered a webinar via the ICB so please do access this if you have an NHS email address Cervical Screening Decision Pathway Tool for People with Learning Disabilities

In addition here is a template easyread invitation letter (PPT 1.52mb)

We also have a signs and symptoms guide to reduce risk of avoidable delays in diagnosing cervical cancer for people who will not be screened after the pathway is followed

Contact the Health Equality Nurse to support anyone on the LD register who has missed or refused / declined a cervical screening

 healthequalitynursing@hertfordshire.gov.uk

People with learning disabilities have an increased risk of death in testicular cancer. This is considered to be attributed to delayed diagnostics – Everyone to some degree can keep a check for changes to your testicles – ww.hertfordshire.gov.uk/LDballscheck

Please share this information

Monitoring weight is key to identifying health changes the person may not be able to explain. Also, obesity and Weight management is an identified area of health needs for people with a learning disability

There are tools to support weight monitoring, wheelchair scales and weight management available

www.hertfordshire.gov.uk/LDweightcheck

People with a learning disability are at a higher risk of developing type 2 diabetes, managing this condition can be complex for someone with a learning disability.

Here are some resources collated by diabetes UK to support your practice and improve care for people with diabetes and a learning disability:

Improving care for people with diabetes and a learning disability | Diabetes UK

The service has created two videos to support understanding for people with a learning disability about type 2 diabetes:

Graham’s experience – https://youtu.be/-kJ4u0PYCl4

LD Nursing service information video - https://youtu.be/QRLOiMPA2ds

DNACPRs and ReSPECT documents are scrutinised by the LEDER mortality review to ensure that there is no reference to a persons learning disability in relation to them not being suitable for resuscitation.

Remember that next of kin and carers CANNOT give permission or refuse permission for a DNACPR – this is a clinical decision.

This Guide will help regarding how to use carer and family to support with DNACPR when a person doesn’t have capacity to be informed of your clinical decision.

This guide gives some examples of wording for ReSPECT tools when completing for someone with a learning disability.

We have some easyread information on DNACPR under Help with your health.

Changes in Mood and behaviour (PDF 270KB) Opening in a new window – a checklist for health professionals and carers to consider causes of behaviour changes and rule out physical health causes.

LeDeR is a national service improvement programme looking at the lives and deaths of people with a learning disability and autistic people. The programme aims to improve care, reduce health inequalities and prevent premature mortality. Every death needs to be reported  Report the death of someone with a learning disability or an autistic person (leder.nhs.uk)

LeDeR reviews will look at how Health and care professionals have enabled equitable health outcomes and taken steps to reduce the risk of avoidable deaths through  reasonable adjustments , accessible information, annual health checks and medication reviews of people with a learning disability, autism or both (STOMP)  happen and health action plans are acted upon. 

GP practices will be notified of any lessons from LeDeR reviews  so they can take the learning from reviews and making the improvements in their services for people with a learning disability and autistic people that have been identified.

We have been working with the preparing for adulthood workstream and have created a preparing for a healthy adulthood guide and videos  for parents and carers of children with a learning disability or learning difficulties, to help enable their child to be health aware and tolerant of investigations.

Please do share the link to this guide, on the SEND local offer, with all your under 18s: www.hertfordshire.gov.uk/preparingforadulthealth.

Weighing up the risk and benefits of menopause treatment options is a real challenge for people with a learning disability. This pathway helps to understand the level and impact of symptoms they are experiencing in order to make a clinical best interest decision where someone lacks capacity. The people supporting the person should complete the MPATH  over a 3 month period and then this is used to aid discussion of options, risks and benefits.

The Menopuase Medication Decision Tool  is then used as the mental capacity and best interest tool which ensures a holistic approach is taken and the person is involved in the decision as much as possible through use of this tool and  the Easyread.

People with Downs Syndrome have a higher prevalence of early onset dementia and therefore a baseline assessment is carried out at age 30. Here is a flier you can share with patients and carers or put up as a poster

Here is some information on how and why to link with the Community LD nurses on all patients with Downs Syndrome.