Treat me well: Simple adjustments make a big difference

[Mike_Mencap]

Treat me well is a campaign to transform how the NHS treats people with a learning disability when they are in hospital.

Over the past 4 years, Treat me well campaigners have been working across the country with newly formed local groups to engage with their local health trusts and address the issues affecting people with learning disabilities and autism when they go into hospital.

The campaign calls for:

Better communication

More time

Clearer information

Reasonable Adjustments:

The campaign asks the hospital trusts to make the reasonable adjustments needed to make sure people with learning disabilities and autism and treated equally and with respect.

There are over 40 Treat me well groups across the country and we have set up a Treat me well campaigners facebook group so that people can share their experiences and continue the campaign in their specific health trust areas. There are over 220 members of the group so click on the link below to join us and get involved.

facebook.com/groups/1713511...

There are many ways to become a Treat me well campaigner. Sarah Leigh and her son Nate recorded a video to support the campaign and are strong Treat me well activists. You can watch their video at the link below:

facebook.com/Mencap/videos/...

More information about the Treat me well campaign can be found here:

mencap.org.uk/get-involved/...

[VictoriaCA_Mencap]

Since working for Mencap, I've learnt so much about reasonable adjustments and how important they are. When I take my daughter (who has special needs) to the hospital for a blood test, they have a fantastic play therapist who asks each family if they need any support. She once gave my daughter an Ipad to play games on when having a blood test. She was so enjoying the game that she didn't even realise the blood test had finished!

Anyone else had a good experience of reasonable adjustments being made?

[LDAutie in reply to VictoriaCA_Mencap]

Hi VictoriaCA_Mencap I’ve had some very good experiences, for example, being brought into resus without my proloquo2go due to status epilepticus seizures-after recovering,the staff showed me a book of PECS to communicate with them,every Ward and hospital shoud have one but they don’t.

Another hospital,always gives me a quiet room to wait in while waiting for appointments etc.my staff have to keep going in and out to see if my name has been called though.

I get home visits for blood tests,I have quite a lot of them due to being on so many epilepsy,pain and behaviour meds so they do home visits as I am calmer than when in an unusual environment.

The lady who does mine is quite scared of me for some reason though,and has tried to forward me onto the hospital for blood tests,she says I am very unpredictable which is not true,I react badly to the fiddling around under my skin they do,I’ve never been violent to her but I stim a lot and hit myself a lot out of stimming and sometimes anxiety.I don’t think she does much work with non verbal autistic&LD people.

[VictoriaCA_Mencap in reply to LDAutie]

Good to hear you've had some positive experiences. PECS, a quiet room to wait in, and having blood tests at home are excellent examples of reasonable adjustments. Some hospitals have pagers for patients who need to wait in a quiet room. Have you thought about contacting your local hospital (PALS or the Patient Experience Manager) and asking them to consider getting pagers? There's an example here: pagercall.co.uk/product-pag...

Or if the hospital won't get pagers, you could suggest they get a small whiteboard up in the reception desk where they can write down the name of any patients waiting in the quiet room. That way, if a doctor/nurse comes out, calls your name, and you're not there, they can look at the whiteboard and see you're in the quiet room.

I'm sorry to hear about the lady who does your home blood tests though. Sounds like she needs some learning disability and autism awareness training. You might want to ask the hospital to send you someone who has experience of treating patients with autism and learning disabilities. She needs to understand that your stimming is your natural way of dealing with the stress and anxiety of the blood test - that you're not at risk of harming the nurse. Sounds to me that she needs to realise your behaviour is not unpredictable - it's normal for you. If she knows to predict beforehand that you might behave that way, then it wouldn't be 'unpredictable' behaviour would it!

Hope that helps

All the best to you.