Hospital Experiences

[JulieB1959]

Back in 2007 Mencap published the Death by Indifference document, which was sent to many government bodies.

It described the appalling treatment of people with learning disabilities in NHS hospitals.

Almost 30 years on I would be interested to hear if anyway has any experiences of where things have improved.

My story is my 58 year old sister with cerebral palsy is still experiencing disgusting and substandard treatment when she is in hospital. Its like they forget she is a person, because she is non-verbal.

Our most recent experience this week, has been as appalling as ever.

Day 1 of admission, the first and only contact I had with a Dr was to insist I agreed to a DNR (Do not resuscitate) I point blank refused, at which point the Dr told me well the ICU staff just wont intervene.

Then over the week I witnessed, staff setting up drips, inserting cannulas, putting on oxygens masks, taking blood pressure, as well as undertaking personal care activities, where not one single person spoke to her, explained what was happening, acknowledged that she was a living person! This was all whilst I was sitting with her.

I have of course made a formal complaint, which will now take the hospital 45 days to respond to.

Surely we should be expecting better treatment for our loved ones, and in my opinion perhaps we need another report such as Death by Indifference to bring this barbaric treatment of our loved ones to the forefront again.

[49Twister]

This is shocking, and absolutely not good enough. My son is 50 and I dread the day he ever goes into hospital. He has Severe Learning Disabilities and is terrified of even going to the doctors. Are you allowed to stay in the hospital with your sister as she is non verbal?

[Tracidu]

I am so sorry to hear your sisters story . Why doesnt anyone in authority care about this enough to to make sure that the disabled patients are treated with humanity and kindness . I hope your successful in your complaint to the hospitol and if you feel up to it let us know how you get on with it .On a similar subject

I have just signed a petition to stop the cruelty of putting people with learning disabilities into hospitol care settings , alo I have just read about a family trying to get thier son out of one of these places in which he was very badly treated .

I was shocked after lock down when my sons daycare wanted to know if he had a DNR . He is very healthy and full of life and fun. There is no empathy with parents or carers as to how upsetting this is , I wonder how they would feel if it was one of thier family?

I hope your sister is well .

[Bluey203]

So sorry to hear of your sisters treatment, it is shocking and unforgivable. I think there needs to be specific mandatory training for all NHS staff, so they have better understanding and compassion for people with learning disabilities, particularly those who are non-verbal.

My son has severe learning disbility and is non-verbal, he has the understanding of a 2yr old, but enjoys life, loves swimming, walking, music etc, he has quality of life.

What 'professionals' don't seem to understand, is even when someone is non-verbal, and has limited understanding of speech, they are still very attuned to a person's tone of voice, just the sound of a compassionate, caring voice can help relax and calm them in difficult and scary surroundings.

To not even talk to your sister is totally disrespectful, they definitely needed reporting!

[Silverelephant]

I thought you might find this interesting.

hee.nhs.uk/our-work/learnin...

[Bluey203 in reply to Silverelephant]

Hi silverelephant, I have heard about the Oliver McGowan mandatory training for all professionals who come into contact with learning disabled/autistic individuals.It is well intentioned and a long time coming, a shame it took a tragic event to highlight the inadequacies.

Also a shame the course is so short, just 1hr online or 1 day for face to face training. I feel it should be ongoing training.

With some people it may purely be a tick box, and not put into practice, especially with those who are nonverbal, as experienced recently by JulieB1959 and no doubt many others.

[Silverelephant]

I absolutely agree. It is scary to be a loved one of someone with a learning disability and be fearful of them getting the correct treatment and respect when they attend appointments. The tragic circumstances of why the Oliver McGowan training exists is all of our worst nightmares. I am grateful that his parents set this training up to try and make a difference. I know that alongside every trainer is a co-trainer who has lived experience. My personal hope is that whether it’s an hour or day listening to those with lived experience will make them think twice the next time.

[FragileXmum]

So sorry to hear about this shocking treatment. During the pandemic I raised the subject of DNR notices with my MP, Dr Liam Fox, as I had heard some concerning stories from a couple of other mums of disabled adults. This is the NHS response I was sent by his office:

"Thank you for your email of 17 February 2021 on behalf of E, about Do Not

Resuscitate Orders for people with a learning disability. I have been asked to respond and,

below, I set out some information which I trust will be useful to you to help allay your

constituent’s fears.

I can confirm that it is not the case that people with a learning disability should have a

DNACPR notice put in place as a result of a Covid-19 diagnosis.

NHS England and NHS Improvement is clear that the blanket application of DNACPRs is

unacceptable and that standards and quality of care should be maintained even in

pressurised circumstances.

This position has been consistently maintained and supported by our national partners

throughout the pandemic, continuing to emphasise the importance of individual decisions

whilst simultaneously acknowledging blanket applications as unacceptable. The joint

statement from the British Medical Association, Care Provider Alliance, Care Quality

Commission and Royal College of General Practice can be found here, with the subsequent

statement from the Nursing and Midwifery Council and General Medical Council available

here.

More broadly, the joint statement issued by NHS England and NHS Improvement and

Baroness Campbell in May 2020 addressed the importance of personalised approaches to

care and treatment.

Published in September 2020, the 2020/21 General Medical Services (GMS) contract

Quality and Outcomes Framework (QOF) states that all DNACPR decisions for people with a

learning disability are to be reviewed to ensure they were appropriately determined and

continue to be clinically indicated. This supports wider work being undertaken by the Care

Quality Commission (CQC) which has committed to undertake a review of DNACPRs at the

request of the Department of Health and Social Care (DHSC). More information can be

found here.

NHS England and NHS Improvement Palliative and End of Life Care Programme continues

to liaise with NHS England and NHS Improvement regional colleagues to understand

whether alleged application of DNACPRs continues to be a concern and to establish

potential escalation routes for this. In addition, public-facing information on DNACPR has

been published.

I hope this demonstrates the continued clear national commitment to ensuring an

individualised approach to all treatment and support decisions irrespective of the person’s

age, gender, disability or condition.

Yours sincerely

Steve Hilton, Deputy Head of External Affairs, NHS England and NHS Improvement"

[Tracidu in reply to FragileXmum]

Thankyou for posting this , lots of words but does this information get passed to day centres. I was approached by a staff member in a matter of fact way which he said was a company policy about having a DNR for my perfectly healthy adult son . My heart sank

[JulieB1959 in reply to Tracidu]

I am very surprised that this is something that has been discussed at a day centre, and in my personal experience, is a one off decision that that is made at a specific time. I again personally do not have this or wish this to have it recorded on my sisters medicals notes, or mine for that matter. I think these decisions are best made based on the situation you are facing. I guess if there as been a history for invasive medical interventions in the past, ie lots of intubations, etc then maybe there does become a time when you decide enough is enough and put that DNR in place.

[VictoriaCA_Mencap]

Hi Julie.

My name is Victoria and I work in Mencap's campaigns team. I just saw your post and was very saddened to hear about your sister's dreadful experience in hospital. It was awful to hear how she was treated.

I take it your sister has a learning disability as well as cerebral palsy?

We have a learning disability helpline that offers information, advice and support. You can contact them directly on [e-mail] and they can then look into what support they might be able to offer you and your sister following this incident.

We are always looking to gather case studies which highlight the health inequalities faced by people with a learning disability to use in our campaigning and policy influencing work. Would you and your sister like to share more about your story with us? You can be named or be anonymous. Feel free to drop me a line on [e-mail] and I can put you in touch with our storytelling lead. I'm away now on annual leave until 15th April.

It's good that you've complained directly to the hospital. May I ask which hospital it was? You can let me know by email if you'd rather not mention it here.

Best wishes,

Victoria Wright

Senior Engagement and Mobilisation Officer