Looking for some advice or if anyone having similar experience. I want my son to have the Covid Vaccination, he has pmld, so very little understanding non verbal, etc. I know from past experiences with blood test etc that he will resist and fight if a nurse comes near him with a syringe. So he will need to be held, arms held, etc…He 17 now, so it’s not as easy as when he was little!
I am going from pillar to post. GP, vac centres, child dis team,school nurse put in a referral for him to be held whilst be vaccinated, but it was rejected.
I have emailed NHS, local authority,etc…NO ONE wants to take responsibility for this…so not sure where to turn next??
He attends an amazing special school who have been very supportive, but as with most schools Covid is in the school, with staff and pupils going off ill…so I am really worried about my son getting Covid,band he is non verbal, I won’t know how I’ll he is…I gave been chasing this since Feb…the system is wearing me down emotionally.
The only next stage I can see us a legal case of Disability Discrimination,VAs the health service are not providing “Reasonable Adjustment s” in order for my son to be vaccinated.
Any help suggestions, gratefully received.
My son has severe learning disabilities and autism. 24 years old and terrified of needles. His support workers did a social story and practised this for a few weeks before getting him to the clinic. No-one would take responsibility for him being held. The idea was to give it a go and if it didn’t work it would give more weight to the argument for being held. In the event, because of all the prep he was okay with his support worker holding his hand quite tightly and the nurse picked an opportune moment. Second jab, he was a bit more wary but amazingly didn’t fight. This was totally unexpected. He had been signed up for needle phobia support before the pandemic but it never came to anything.
I used to get around this, when my daughter with PMLD needed restraint for medical treatments, by saying I was taking responsibility for her being held. Fortunately I was mostly able to do this alone, as she was not that big. I am uncertain how deprivation of liberty (DOL) legislation works with someone of 17 years? I hope the Covid Vaccination team understands soon that the benefits of the treatment are the most important issue here.
Would it work to get a social worker to arrange a best interest decision meeting? I hope you can soon find a way through for your son to have the vaccine.
Hi there - I wondered whether you might also want to get the ideas and experiences of the wider online PMLD community?
Alongside this fabulous Choice PMLD Network, is ‘PMLD LINK’ and our community of practice group ‘Raising the Bar’ - both pages on facebook.
Like here, everyone is incredibly generous in sharing suggestions. The vaccine has previously been a topic of blogs and discussions there.
We’ve had some really creative and plain, common sense stories - people having their jab at home or in their car, wherever they are most comfortable and without the extra trauma of clinics or hospital.
There are some incredible LD Nurses and Acute Liaison nurses out there who have made sensory-friendly, accessible clinics.
Check us out on Facebook!
Annie Fergusson www.pmldlink.org.uk
I’m so sorry you are having difficulties and I’m also sorry I don’t have a solution for you.
My son is also non verbal and 17 and terrified of needles. It took both me and my husband to hold him steady and provide reassurances (and treats!) whilst he had both jabs. Luckily the nurses were quick and steady and it was over in seconds. They even provided an outside space for us to wait whilst they monitored him for 20 mins afterwards (to ensure no side effects).
I sincerely hope you are able to work something out for your son.
Best of luck
Do you have access to a service like IHOT , intense health outreach team , in Gloucestershire NHS. A service which will look at desensitization plans and ways of making as many reasonable adjustments as possible.
They are qualified Learning disabilities and autism nurses. Is there a similar service where you are? Can the local cldt help? Community services. I hope you find a good rgn too at the GP so in the future trust building may help. They work with psychology and psychiatry and physiotherapy and carers and families to help with physical health needs for people with additional adjustable requirements.
Hope you find some help. All the best.