Notes from our Healthcare Workshop

Why might it be of interest?

Healthcare for our young people is of interest to all of us.  The information shared by our speakers gives an insight into how the health service works and what we can expect of it.

We had representatives from Your Healthcare, a CIC commissioned to provide health services by the NHS; a local GP responsible for Learning disabilities and neurodevelopment; and representatives from CAMHS transitions service.

 

Panel:

Paul Shanahan, Your Healthcare

Lead for Research

Lead for Behaviour Analysis

Sunita Ozrovech, Your Healthcare

Lead Physiotherapist

Neurodevelopmental Services

Clare Armstrong, SW London NHS

GP Clinical Lead for Learning Disabilities and Neurodevelopment for Kingston and Richmond

Gracie Holt, Kingston Hospital NHS Foundation Trust

Learning Disability Liaison Lead Practitioner

Kingston Hospital NHS Foundation Trust

Nicole Nunes, Richmond CAMHS

Transitions worker

 Helena Karppinen, working alongside the Transitions worker role

Assistant Psychologist

 

Sunita and Paul introduced Your Healthcare (YH)

YH is a CIC (community interest company), a not for profit organisation that has been commissioned by the NHS to provide healthcare services locally.  So while YH is not part of the NHS they are providing NHS services.

To access YH services a person must be registered with a GP in Richmond or Kingston.

The expectation is that people with a learning disability (LD) should be able to access mainstream health services.  YH can offer support if a person cannot access mainstream health services or if more specialist help is needed.

LD services from YH:  https://yourhealthcare.org/services/neuro-developmental-services/

Work as a multidisciplinary team comprising:  Community Nursing, Dietetics, Occupational Therapy, Physiotherapy, Psychology, Psychiatry, Behaviour Analysis, Speech and Language Therapy

Additionally YH offer an ASD diagnostic service for adults.  This a diagnostic service and further support is not offered.  ADHD service offered only in Kingston – diagnostic and interventions.

YH has carried out research around healthcare transitions.  Paul Shanahan is the Research lead at YH.

YH now accept referrals from age 16 for initial meetings with the healthcare staff currently involved.  The aim being to smooth the transition into adult healthcare services.

 

Gracie introduced her service

Gracie runs the LD liaison team at Kingston Hospital along with an LD nurse. Her background is as a speech and language therapist. The team has been in place since January 2021, similar teams at other hospitals are longer established.  They work closely with the LD community team.

The team can work with anyone with LD, 18+, coming into the hospital – both in patients and out patients.  The team may have a lot of involvement or very little – entirely dependent on the needs of the person.  They can support with mental capacity assessments and at best interests meetings. They may also visit your young person on the ward.

The team know everyone in the hospital and also train other staff.  They are active in producing policies and strategies.  They know staff on the children’s wards.

Where relevant the team would try to get to know young people from age 17 ½ .  They would look at creating a hospital passport, making reasonable adjustments (and ensuring these are flagged on the system) and meeting with matrons in adult services.  They would like to be able to start getting to know young people from age 16 but are not currently funded to do this.

Kingston hospital has a health passport format but others are widely available.  An electronic copy is best as healthcare staff tend not to look at paper based notes and it is easier to keep an electronic copy up to date.

 

Clare Armstrong introduced herself and the GP services she leads on

Clare is a GP and one day a week she works as the clinical lead for LD and Neurodevelopmental services in Richmond and Kingston.  She liaises with colleagues on our panel.  This service is looking for where there are gaps.

Clare is aware that families feel supported by having a paediatrician and that the thought of no paed is frightening.  However, the GP is still there.

They are interested in young people age 14+ with LD.  And rely a lot on the annual health check carried out by GPs.  The aim of the annual health check is to record health issues, note any symptoms not currently being addressed, vaccination/immunisation and liaising with social care. Anyone not currently being invited for this health check should check whether their young person is on the learning disability register as it is not necessarily automatic. (e.g. Autistic young people are not considered for this register.)

The annual health check is also an opportunity to record reasonable adjustments, early appointment, longer appointment, quiet space

The more frequent reviews that young people may have had from children’s services are not likely to be continued in adult healthcare.

Nicole Nunes

Nicole works in CAMHS, tier 3.  Her role is focussing on when a young person is leaving CAMHS and what ongoing support might be needed.  Their aim is to be holistic, work with other organisations and start planning earlier.

There is a separate CAMHS for people with LD but it is only for consultation and doesn’t provide support.

Learning Disability diagnosis:  it might be surprising but LD is not usually diagnosed standalone and GPs can’t diagnose.  It is usually part of another diagnosed condition.  For many of our young people the LD will be obvious but it won’t be quite so clear cut for others.  It is important to understand that ASD is not considered an LD and therefore LD services would not be available to that individual.

For young people with ASD YH can help establish whether there is also an LD from age 18 if children’s services have not already done so.

GPs hold an LD register.  A parent can ask if their young person is on the register and request that they are put on the register.  A community paed might tell a GP that a young person has an LD.  They are also working with AfC to have this information passed on.

  

Annual Health Check

We had a lot of discussion about the annual health check.  This seems to be key to supporting people with LD.  The idea is that the check is holistic and it can certainly be a long check list.  As such the whole thing might not be completed every year – not least because the patient might get bored with the process!

Clare’s team are encouraging the use of pre-check questionnaires so that more minor things can be covered off that way and do not necessarily need to be included in a face to face check – a lot of info can be gathered through a questionnaire.

The patient should have a health action plan at the end of their annual health check and they (or you as their carer) should have a copy.  Again, it must be stressed this is only for people on their GP’s LD register. You have the right to push for a learning disability assessment if you believe your young person should be on the register.

What information about additional needs does a GP keep?

Information about a young person’s additional needs when attending a healthcare setting can be held in their notes – for example, reasonable adjustments (longer appointments, quiet room etc).  You can discuss this with your GP at an appointment or write.

Will other healthcare professionals be able to access this information?

When a GP makes a referral they should include information about adjustments needed but this won’t always happen.

NHS England has been working on a project to enable information to be shared more widely but it is still some way off.  All the services use different systems.  There is work more locally on a London Care Record but again this is not current or imminent.

It should also be noted that while a patient’s notes may contain information about adjustments needed there’s no guarantee that they will be read ahead of the appointment.  Needs can be flagged, including what a receptionist might see, but this is a manual process and different GPs will manage it differently.  Ask your GP what they can do.

It can be helpful to get a young person used to going to see the GP with visits when they are not actually unwell so that when they are in need of seeing the GP they are already used to the process.  This is something to discuss with your GP.

Hospital liaison

You should let Gracie’s team know about any appointments and adjustments needed.  They don’t have access to your upcoming appointments and if the health professional doesn’t let the team know and you don’t let the team know – they won’t know! A hospital passport sent ‘before’ the emergency is helpful and Gracie’s team will manually add the information, so that they are prepared if your young person does need to visit. Visit https://kingstonhospital.nhs.uk/patients-visitors/information-for-people-with-a-learning-disability/ and you can download a hospital passport template from their website. You can also email or call Gracie to let her know your young person is coming in, or on their way.

Hearing tests

These are not part of the annual health check and parents should flag if they have concerns – if a pre-check questionnaire is in use this would be the place to flag the concern.  Usually every 2 years.  If there is something that needs checking the GP would refer to audiology.

At YH the SaLT team manage the list of referrals.

Audiology at Kings has a specialist LD team and YH work with them.

Ear syringing:  different GPs or areas may offer this in surgery, others don’t offer it as an NHS service.  If a general anaesthetic would be needed this would be a hospital appointment and the liaison team can support with this.  If a young person is having a general anaesthetic it would be sensible to co-ordinate other procedures to happen at the same time.

Mental Capacity Assessment

The liaison team can help support at a best interests meeting which will happen if a young person is deemed not to have capacity to make a specific decision about their healthcare.  All interested parties, and that includes parents and carers, should be involved in a best interests meeting but it will be the doctor or consultant who will make the decision about treatment not the parent.

Single point of access

Knowing who to ask and when would be helpful but there isn’t currently a single point of access.

Paul recognised the need for YH to do more outreach at schools, transitions, fairs, etc and to improve the website as it is not as clear as it could be.  All practitioners at YH have a transitions role as part of their job so everyone should have some awareness of the needs of young people transitioning into adult healthcare.

Your Healthcare

YH need a referral to engage with a young person.  Ideally from children’s service – a paediatrician or school nurse, for example.  However, parents can self-refer.  YH attend the social care tracking meetings in Richmond.  These are meetings that track young people who are likely to need social care support when they turn 18.  This doesn’t mean every young person with an EHCP – this is something of misinformation as the majority of young people with an EHCP have purely educational needs.

YH find it beneficial to have early referrals.

A parent commented that parents can self-refer to Oak Lane Wellbeing centre

ASD/ADHD services

These are commissioned differently for each borough which is why the same service is not available across both boroughs.  YH recognise that there is a lack of ASD services.  The current services are primarily diagnostic only and only offer interventions in a very few cases.

Social Prescibers at GP surgeries in Richmond should be able to work with patients with ASD.  They need a referral from the GP.

Mental health referrals

Some services for 18+ will accept early referrals, others will not.