Can’t tell you how absolutely livid I am with the NHS today. My 25 year old son has cerebral palsy and is severely mentally disabled, in a chair and double incontinent. He has no understanding of anything in life and needs constant care.
Anyway, today I tried to book him in for his annual flu jab. The lady on the end of the phone said that he will have to wear a mask when he goes for it. I tried to explain to her that making wear a mask is impossible as he will just immediately tear it off. She replied that if he doesn’t wear a mask or removes the mask in the surgery we will be asked to leave. She said in no uncertain terms, he MUST wear a mask. So I said the only way he would wear a mask is if I PHYSICALLY RESTRAIN HIM, ie tie his arms to the chair, which I am not prepared to do. For one, he would get very distressed, I’m not going to put him through that. She checked with the doctors and replied that if he needs to be restrained then that is what I will have to do. I couldn’t believe what i was hearing. We normally take him to tesco for his flu jab and pay because it saves a lot of hassle down the doctors every year. But all the high street stores are not giving out flu jabs to anyone under 65 this year. I don’t know what to do.
You need to contact your Primary Liaison Nurse who will intervene on your behalf. Your son is entitled to reasonable adjustments to access healthcare.
Main Office
Parity for Disability
Supporting people with multiple disabilities
www.parityfordisability.org.uk
Main Office: 94 Whetstone Road, Cove, Farnborough, Hampshire, GU14 9SX Tel: 01252 375581
Parity for Disability is a registered charity no. 1071571 and a company limited by guarantee no. 3584503.
Internet communications are not secure and therefore Parity for Disability does not accept legal responsibility for the contents of this message.
This e-mail and any files transmitted with it are confidential and solely for the use of the intended recipient.
Please consider the environment before printing this e-mail.
I go through similar struggles with my brother every time he goes into hospital. The nurse is obviously ignorant and untrained in dealing with folk with learning disabilities. On the last few occasions I have made a formal complaint - I am in the middle of one at the moment that has ground to a halt due to the pandemic. However, it succeeded in my obtaining the mobile phone number of the Lead Clinical Nurse in Acute Medicine who I now ring if my brother requires hospital or other treatment in a setting he is unfamiliar with and who are this ignorant about learning disability. I suggest you find out if there is a Learning Disabilities Liaison professional for your health authority and if there is ask them to intervene. If you are in England, there should be one, it is just a question of finding them. I am in Northern Ireland and there is not, so I went on the website and got the contact emails for the CEO, Directors of Medicine, Nursing and their Patient Liaison / Customer Feedback, formerly known as the COmplaints Department and I wrote them one long email copied to all of them, so they knew I was raising a complaint. I included my phone number and within a day or so I got a response. It is infuriating that this has to be the procedure every time he goes to hospital or a health care setting that he is unfamiliar with, but there is it. I wish you luck. You need a strong stomach and a bellyful of anger to keep going, but I am sure you have both!!!
Hi Matt
Alison is correct and I would also suggest you report your Dental Practice to your local Clinical Commissioning Group , quoting all that has occurred.
I would also suggest you copy in your local Healthwatch and Care Quality Commission
As to your local Pharmacy, they should also be providing free injections to your son.
See [The flu vaccination winter 2020 to 2021: who should have it and why]
Unfortunately many organisations still believe they can please themselves, when they should be following Government guidance. If they do not then they are not acting as a responsible organisation and not following their professional Code of Practice.
In many instances it is a problem in getting past the ‘front desk’ and this will be over turned when the Dentists within the practice are made aware, but in your instance, it would appear that the Dentists are, unfortunate, unaware of the particular guidance and that is extremely worrying for all patients of the practice.
I hope you manage to get this sorted, but, unfortunately it is another barrier that families of persons with LD and/or autism have to contend with, have we not already too many barriers to deal with.
Life, unfortunately does not get any easier.
Good Luck
Chris
Family carer of a family relative with LD and Autism
That’s appalling! They should understand those who can’t wear masks. Time to get to health to get it sorted out. We should all be doing this
Hi Matt,
Wonder if you could let me know which the GP surgery is, I could ask our regional NHS colleagues to talk to them about making reasonable adjustments. If you would like me to do that, please email jo.whaley1@nhs.net
We are also writing out to all English pharmacies, including in supermarkets, saying that there is enough flu vaccine and they should be giving it to people with a learning disability too.
Many thanks
jo
Jo Whaley
NHS England and NHS Improvement
Sorry to hear your experience when Government and NHS have invested millions to break down barriers and improve services for PMLD and their hard working 24/7 mother carers. Clearly not working! Barrister Steve Broach, 39 Essex Chambers or Anne-Marie, Rook Irwin Sweeney will be very interested see if they can support or not. No connection with either, far from. Good luck. change GP’s, what numpty’s
Try your local pharmacy?
What a terrible situation, I would speak to the local CCG in your area and tell them your circumstances, the GP should be making reasonable adjustments.
Hope you get it sorted
In our area Kingston MENCap held a very successful ‘flu jab’ morning for our members. Maybe that’s the way forward.