I would like to hear from any parents/carers or support staff who have been asked to stay over in a hospital ward because the staff on duty at the hospital are not properly trained to provide the support to the people we care for.
We supported our son with PMLD over a period several weeks while he was in hospital. This either involved staying in nearby accommodation at our cost - this large hospital was some way from where we lived. (Ronald Macdonald accommodation only covered parents of younger children) or getting in at the crack of dawn. You do need to liaise with the hospital learning disability nurse if they have one. We were able to insist on providing support as we had Deputyship for Health & Welfare, but to be fair the hospital staff were more than pleased for the help.
PMLD LINK volunteers have been working with Mencap on their #Treat me well campaign to push for mandatory Learning Disability training for all healthcare professionals in acute hospitals.
As part of our partnership work, we are focusing in particular on the support people with profound and multiple learning disabilities need to get the best care, drawing on the benchmarks of the PMLD Core & Essential Service Standards.
Together with families we have been developing some simple resources to help raise awareness of what good quality services should look like - addressing the very issues you raise here. These will be launched on 21 May as part of the ‘Profound Awareness Day’ facilitated by Pamis.
Check our website, facebook pages or twitter for alerts!
You can download free copies of ‘Supporting people with profound and multiple learning disabilities. Core & Essential Service Standards’ (PMLD Standards)
Nobody formally asked me to be at my sister’s side for the 8 months she was hospitalised. But it was apparent if I didn’t she would suffer hugely because staff had no way of ‘getting her’. The LD Nurses just came in with cuddly toys and stood about ineffectually,
not asking me for any insights about her, instead all making assumptions.
I heard Nurses refer to her as retarded and laugh at her.
So I drove up day after day to be with her. To feed her the foods I knew wouldn’t hurt her tummy (instead of letting the staff give her all manner of gluten/dairy and additives that would). Which meant I bought her in ‘clean’ food at my own expense. Not saying
that to blow my own trumpet but because the system simply would not listen to me when I said ‘she is non-celiac gluten intolerant pls do not give her gluten’. I was under siege from the staff to allow them to feed her the way they were comfortable about. It
was exhausting. (Has taken 7 years for the system to finally say ‘ok then’ about that issue
I cooed over her to calm her anxiety about all the monitors and flashing lights and moaning from other beds, played her music, massaged her feet, brought in an Intensive Interaction Facilitator (thnx to Phoebe Caldwell Fdn) and a couple of CranioSacral therapists
to help her feel met by at least a couple of sensitive souls. There were some Nurses who stopped by and paused in their day to try and connect more and we did appreciate that. But there were so many, protected by a Matron who was un-self-aware, who presented
a lot of cold, hard density to deal with at a time when really one needed softness, compassion, humanity. Fixicity of thinking, old paradigms and beliefs about disabled people, all of that last century thinking that is such a non-starter for any real human
So I continued going in day after day for love not money, protecting her from the endless Oromophing by Nurses who misunderstood her stimming and humming and who just wanted to shut her up. Fought her corner relentlessly against a barrage of misunderstanding
and prejudice. Got her into a chair I could wheel around the ward so she could see all the other people in beds and explore the world she was cooped up in.
It felt very much an Us vs Them scenario. The LD Nurses were noticeable by their absence and lack of interest. Even the Priest only found it in him to send in 1 of his holy ladies for 10mins to look at her while she was asleep. I had asked if they could support
us/me by giving me a break occasionally. In 8 months we got 10mins of his time ! So Godly!
Meanwhile the Commissioner was no help at all and support of any other kind was withdrawn quickly due to costing concerns. Ok for family to run themselves into the ground for free… They abandonned her to a world that did not comprehend the first thing about
her. People who shouted into her face, as tho for the 1st time in 5 decades she might suddenly choose to become Neurotypical and speak?
So for us the day to day experience of mainstream hospital was pretty much a nightmare. However the Surgeon who did my sister’s hip replacement was wonderful.
More recently she had to be hospitalised overnight again in a different hospital. The staff were lovely. It was late, the Carers told me they were not paid to sit with her overnight so they left. I stayed with her, but I was so tired. The only chair was a stiff
high back chair I couldn’t sleep in. So I climbed onto her bed and lay next to her. The Nurses came in, saw how exhausted I was, while my sister was still humming and stimming away at 1am, and they went off to get me a mattress and some blankets. So sweet.
It was a much pleasanter experience.
I share all of this because it was truly awful to see how little Autism and LD was understood in the 1 hospital. How alone we were without much human compassion or understanding. How no-one had the ability to just come in and be human with us and listen. Ask
questions. The comms was defensive, armoured, inauthentic and so on. I wouldn’t wish that on anyone. Its why I fully support what Rosa Monckton is currently doing by trying to set a Precedent around Deputyship of Welfare in the High Courts. As family we need
to have some influence in these clinical medical settings. We need a voice.
But yes we also need to see a paradigm shift in attitudes. A lot more training. Especially around Autism. And as always its the Leaders who set the whole tone. If the Ward Sister is someone who is inauthentic and unable to be human and real the whole place
will echo that. If she/he is a role model of integrity it lifts the whole atmosphere. It sets a higher bar. Sometimes these qualities are just innate. You get what you get. But Education is helpful.
Thats my perspective anyway.
i feel so sad to read this email, it was like some one was writing the story of my own experiences with my sister, an adult with server learning difficulty, i had to do all the things, just to keep her healthy ,whilst in hospital , just one of the misunderstandings
that took me eight months to sort out was , a part time consultant arrived in the ward, looked at my sister said a couple of words, to my sister ignoring my self completely ,went away and decided my sister had had a stroke ??,
went away , entered on my sisters medical notes , a do not resuscitate order, with out any consultation with the family, had the consultant taken the time to ask
the family a couple of questions, why my sister did not respond to the consultant questions , we would have been able to explain to her . i complained to the hospital staff the whole process was nothing more than a damage limitation exercise , i was seen
as the problem, the hospital reps were very polished in there answered but did not admit any thing was wrong .
it was clear i was not going to get an explanation , every time i ask about the consultant the subject was change, i was told the staff would get further training thy would learn from this, so it would not happen again. ?.
well readers, my thoughts are, don,t hold your breath and don,t give up your day job
Yes sadly my experience too - lots of polished answers and BS to cover butts at the one hospital we spent a long time at. Absolutely meaningless to complain, PALS didn’t bother to follow up. Or if they did just got some rubbish letter in the mail from someone
out of touch, high up, again absolving their conscience of any wrongdoing with zero interest in the reality at the coal face.
Sadly years later we need to to back to that Hospital for a related referral and we are being refused. I don’t want to suspect we got a black mark against our name. But the lady who refused us went as cold as ice on the phone when she heard our name. Said to
me ‘we are a very close knit team here’. I take it she means ‘you will hit a brick wall for all time if you try to come back’. Really shocking tribal mentality and unprofessional. But if you go the guy at the top it will all be denied and spun, so no point.
The other thing that seems relevant to mention, given the Oliver McGowan case, is that my sister was left for almost a year on a raft of head meds she didn’t
need. The Psychs labelled her Bipolar when she was grieving my Father’s death prior to hospitalisation. Thus allowing themselves scope to put her into a chemical straitjacket whenever they please. She went into a breakdown, likely because she was impacted
and in great pain. They got scared because she is very strong (like most autistics) so then they massively over-medicated her saying it was mania, driving her to break her hip due to running around to relieve the pain and anxiety the meds put her in to. So
once she was hospitalised the Psychs responsible for putting her on Depakote and Olanzapine disappeared from the scene and simply left her on them for another 8/9 months. They wouldn’t listen to family concerns about all the side effects going on. The anxiety
was off the scale. She went into seizures and tremors and facial tics and so on. Finally when I got her out I wrote a letter to the new GP and gave it to him in person because I was so used to everyone ignoring me. I wanted just once to feel heard (I was practically
on my knees). I stated all the side effects, printed out the medication leaflets and other warnings. Stated we absolutely knew she was not Bipolar and never has been. If my sister gets a dark look in her eye its a UTI infection, thats it. She has remarkably
good mental health ! When you know someone you know them. The new GP read my
impassioned letter, put his hand on his heart, looked at me and said what do you want me to do? I said PLEASE can you take her off the head meds? He said to me as her Consulting Physician I have to withdraw her from them responsibly
over time and I am willing to do that. I asked ‘how long?’. He said 3 weeks and we shook on it. Within 3 weeks my sister returned to being the calm benevolent being she always is when understood. Night to Day. Everyone was astonished except me. And since that
time everyone who knows her states, without a shadow of a doubt, she is NOT in any way Bipolar. Trying to get a Psych to formally remove the label seems to be about as likely as any kind of honest acknowledgement of the life changing injury she sustained due
to systemic ignorance.
I can’t point to the Hospital for that inappropriate over-medication but our experience back then seems to be symptomatic of a medical system that just
doesn’t listen to family or care much about the lives of autistic/disabled people. It will be interesting to see what Judge Heyden has to say about the Rosa Monckton case. Psychs in particular seem to be some of the last unquestionable Gods of the Old Boy
There were some good people in the system, definitely, but the general attitude we met at the first Hospital towards disabled people was really beyond belief back
in 2015/16. Lets be optimistic things will change. We are meeting much more helpful people these days.
I am very sad tho to read all the dreadful stories of Autistics trapped in ATUs around the country at circa £10k per week, lining the pockets of opportunistic fat
cats busy building more of these ghastly places. Separated from their families, often by hundreds of miles, the people who know and understand them the best. And instead surrounded by staff who often have no clue about Autism. Its barbaric whats going on behind
closed doors. One only has to join a few of the FB groups like ‘Stronger Together’ or ‘Rightful lives’ to see the desperate plight of parents around the country unable to sleep at night, engaged in futile battles with the Authorities…really heart-breaking.
Respect to the Change-Makers is all I can say. Bring on the Revolution
Let these gorgeous misunderstood souls go home, give them appropriate support… which in my experience starts with simply assuming competence, assuming comprehensive receptive ability if no speech, assuming an intact
intelligence, listening and understanding. Being authentic. Speaking to these souls as adults who are often extremely intelligent from a place of honest, open, vulnerability. Bringing in Phoebe Caldwell trained Facilitators. Bringing in HANDLE Autism UK type
of initiatives. Bringing in Cranio-sacral therapy (non verbal energetic communication at its finest) and at the very least training staff in Mindfulness. Thats where I’d start.
A Revolution of gentleness at home with a lot of people listening not talking. And a sympathetic HUMAN GP.
Hi @Georgecureton so sorry to hear this - you shouldn’t be asked to do this (but should be allowed to if it is what you want to do). Staff should have the training (or the opportunity to contact other specialties within the hospital e.g. LD nurses, SLT etc) but as we know there is a deficit in this at the moment and calls for all staff to have more LD training.
To the siblings responding to this post, do have a look at www.sibs.org.uk - the UK charity for brothers and sisters of disabled children and adults. They have guides for adult siblings who are supporting their disabled brother/sister including one on making a complaint and coping as a carer - https://www.sibs.org.uk/support-for-adult-siblings/guides/
Hi Readers ,
my posting about the difficulty i had with hospital, supporting my sister , the first thing i had to do was to separate my personal feelings from the lack of understanding, and use what legislation was available , the piece of legislation i found very
useful was the mental capacity act , once i began to use this the hospital became more focused,
the whole issue was about my sisters treatment, not me. one of the odd things i observed was just how invisible my sister was when any conversation were to be had , there is a massive gap in the training of main stream teaching in hospitals when it comes
to server learning difficulty , autism.