Learning Disability Support Service in Hospitals

Why might it be of interest?

I don’t know about you and your young person but my daughter isn’t keen on anything different and hospital appointments couldn’t be more different from her everyday activities.  Many years ago now a consultant had to come out to the car park for our meeting as Sophie wouldn’t even get out of the car, let alone go into the hospital.

I am glad to say things have got better but it’s still a lot to ask of a learning disabled young person to go to an unfamiliar place to meet with an unfamiliar person to have an unfamiliar procedure carried out.

The learning disability support team are not there to take over from you or a carer or, indeed, the health professional, but to help support everyone involved to ensure the appointment goes as well as possible.

I recently used the service at Chelsea and Westminster, which also includes West Mid, as my daughter had 2 appointments in 2 different departments just a week apart and it had been a long time since she had had a hospital appointment and I really wanted these to work out.

Difficult to know if the presence of the LD team made a difference as everything did go well but I am fairly certain that they helped smooth the way and would have been invaluable if things had not been going well.

Learning Disability Service

Having used the Chelsea and Westminster Learning Disability Service recently I had a meeting with the lead LD nurse, Kathryn, to find out more about how the service works and who it is for.

This team is quite small – 6 in total – and they support people with LD across 2 sites, Chelsea and Westminster and West Middlesex University Hospital.

As long as LD is on a patient’s record the team are likely to know about in-patients – but they won’t know about out-patient appointments.  The out-patients teams don’t inform the service so it is up to the parent or carer to alert the team.  Once the team know that a young person has a learning disability this will be on their hospital records from then onwards.  I think it’s best for parents and carers to assume that they should inform the LD service about any appointments.

When you contact the team about an appointment they will ask for information about the young person.  If your young person has regular appointments you might want to have a hospital passport as it would make it easier to provide the necessary information quickly and repeatedly.  Sophie doesn’t have this so I just wrote an email to the team about her, her needs, what’s happened in the past, who would be accompanying her, etc.  And, obviously, the date, time and department of the appointment!

One of the team will be at the appointment – they will let you know if they can’t be there.  As much notice as possible is appreciated.  This team try to have one member of the team on-site at each hospital every day but they can’t always manage that.

In Sophie’s case the LD nurse went into speak to the health professional before Sophie entered and explained a bit about Sophie’s needs, to take things slowly, etc.  While Sophie was in the appointment they helped her feel comfortable and made adjustments as needed.  For example, Sophie really needed to lie down but she didn’t want to so they managed to get her slightly reclined as the table had an adjustable back.

This is where I think having the LD nurse at the appointment helped.  It wasn’t all on the carer to ask for or even think about adjustments – Kathryn was able to support everyone.

Training

Kathryn does a lot of staff training.  When new staff start they undergo induction training and the LD service has a slot to talk about supporting patients with LD.

In addition, she runs a 2.5 hour session every couple of months and has clients from a local Mencap come to talk about what it’s like going to hospital; what good care feels like; what poor care feels like.

Staff also undertake Oliver McGowan training on learning disability and autism which is online.  This is often mandatory training and it is at Chelsea and Westminster.

Who do they support

Specifically people with learning disabilities and / or autism.  They are not a big enough team to support people with other disabilities unless they also have LD or ASD.

Under 16s are supported by the paediatric service so this is an adult service only.  So they may be able to offer support to a young person 16+.

Their biggest challenge is when a young person comes into A&E as this is unlikely to be a planned visit.  However, even so it may help to notify the team as soon as you can.

How to get in touch

Chelsea and Westminster, including West Middlesex hospital

Learning Disabilities Service

Email:  chelwest.learningdisnot@nhs.net

(this is the best email address to use as all the team monitor it)

For further information and contact details: https://www.chelwest.nhs.uk/your-visit/advice-and-support/learning-disabilities

Kingston hospital

Learning Disability Liaison Service

Telephone: 0208 934 6895 or Ext. 6895
Email: khft.learningdisabilityteam@nhs.net

For further information:  https://www.kingstonandrichmond.nhs.uk/patients-and-families/coming-hospital/information-people-learning-disability