Hello
There has been quite a lot in the press over the last week about these. We would like to know if you have any experience of a DNACPR (these stand for Do not attempt cardiopulmonary resuscitation)
Please reply below or message me if you would like to share your story.
Many thanks
Sarah
My son who has SLD is in supported living and a manager from the trust rang me up and said he was sorry but he had to ask me the question. Did I want my son resuscitated if that became the outcome due to Covid? I was so shocked that this was even being asked as he is only 46 with no serious health conditions. It was apparently mandatory for the manager to ask this question on behalf of all service users, why? If he was much older with certain conditions then I may have had some understanding why they would ask this but that’s not the case. They wouldn’t ask fit and healthy 46 yr olds if they want to be resuscitated if need be, they would just get on and do it to save their life, so why is my son treated differently just because of his learning disability!! I know they are in many ways but his life is just as precious, It's so wrong.
I was concerned about the publicity surrounding this issue so contacted my MP last night (Dr Liam Fox). This was his immediate response: "Thank you very much for your letter which I found very disturbing. The idea that there would be automaticity when it comes to "do not resuscitate" measures in relation to patients with learning difficulties is appalling and, I believe, highly unethical. I will write to the Secretary of State for Health and the head of NHS England to see what instructions have been given to clinical staff in this area. It would be a terrible stain on our society if such measures were being deployed generally though, I have to say, I tend to take what I read in the Guardian with a large pinch of salt." Whilst there is clearly some scepticism, I am pleased that he will be contacting the Sec of State for Health and the Head of NHS England to clarify the matter.
It’s not automatic, they can’t put a DNR in place without a legal guardians consent, but as I said in my post above, the fact that they are even asking the guardians for consent is so wrong.
Thank you 49Twister and FragileXmum for your replies to this.
It is very concerning to hear what happened to you @49Twister
We have been asked for evidence so I will share this conversation with my other colleagues at Mencap.
Thank you again - I know this is such a stressful and upsetting topic and we really appreciate you taking the time to post.
Best wishes
Sarah
Hi
I have attended hospital 12 + times with my sister, who is in her late fifties, since January 2020, the last time being a few weeks ago. She has a mild learning disability, poor mental health at times and possible autism (diagnosed and then diagnosis taken away!) Like so many people with a learning disability , she has type 2 diabetes (medication?) and several other comorbidities which I have noted, she developed after years of being given antipsychotic and antidepressant medication for her anxiety and depression. She was, living in supported living accommodation , before the provider decided she had to leave, giving family 3/4 days notice, out of the blue, and during the height of the pandemic!! Needless to say, complaints to the head of Social Services ensued (The CQC unable to get involved.)
The causes of all these hospital admissions are suspected UTIs (urine samples not usually obtained before attending hospital for various reasons) although the psychiatrist has deemed that some of these bouts are a mental health issue warranting administration of PRN, medication , followed by a watching and waiting approach (my red flag for diagnostic over-shadowing)) and only on a couple of occasions has a conclusive sample been obtained. Early last year , she had a conclusive urosepsis with the usual IV antibiotics and fluids, chest x-ray and made a recovery but her health has been poor since, with recurrent bouts of illness (delirium, fever, sky high BP and heart rate, inability to pass urine, not eating , drinking or able to settle). Long, long waits in A and E. Let's just say it's been hell for her and for me watching her suffer and not knowing which diagnosis is correct and therefore which treatment option to have faith in during these risky times of covid ( to seek hospital treatment if serious infection or to stay at home if mental health problem as deemed possible by psychiatrist). Obviously, the paramedics have the final decision to make, if called . Lots of different opinions from all involved and family controversy ( we are a total of 4 siblings and a parent)!
On one admittance last year, during the pandemic, the consultant, asked me what my sister's quality of life was like- he had met her before when she was an inpatient, so I thought he might have some idea of her baseline. The whole ward went quiet when he said it and the mood suddenly felt sombre. Many of the staff had met/ seen us many times before when my sister had been admitted and from the look on their faces I could see they were concerned. My sister was delirious again and could not speak for herself and was pushing medical staff away and was shouting out non-sensical words and phrases along with swear words and obscenities- not what she would normally be saying and with no recall ever, afterwards. . I have seen some medical staff take disdain form her shouting out, in the past, perhaps not realising that she was delirious. It felt tense and I somehow knew that I had to fight her case . I desperately tried to remember all of the activities my sister enjoyed and reeled off a long list in hope that the consultant would realise that, when well, she was a very active and happy character, who was worth keeping alive!
I was then told by the consultant, that she would be given the advanced treatment plan... I can't remember the actual words used for the treatment but essentially the pathway for total necessary covid treatment, I think he meant ICT, should she have covid.-19 .DNACPR , wasn't specifically mentioned, although on a previous occasion I had over-heard a medic ask the psychiatrist if my sister had a DNACPR order when they were speaking on the phone prior to my sister's admittance. The answer given was , 'No!' I was horrified that this was being asked.
I don't want to come across, in any way, as being unappreciative of the NHS medics - they are to me, the heroes, who have saved my sister's life on so many occasions, but if asked my opinion, I would encourage anyone, who is not himself / herself , likely to be at high risk should they contract covid-19, to accompany their special, loved one, (taking every precaution possible ie full PPE / anti-viral hand foam ) as their advocate, in to hospital, whenever possible. I would imagine that for many, though, this would not be possible for many reasons. My sister and I have been so very fortunate to have not caught covid-19, so far.
It might also be of interest to know that my sister was not placed in the clinically extremely vulnerable group for covid-19 before the current lockdown, and was therefore destined to have her covid vaccination in group 6, I believe, At my sister's GP's surgery, there is a very approachable, empathetic GP with whom, after a long discussion, of why my sister, is in fact clinically extremely vulnerable, with the add-ons of her now living in a residential care home ( where staff can refuse to be tested for covid-19!) and her frequent hospital visits. he agreed that she should be added to the clinically extremely vulnerable list and she was given her Oxford Astrazeneca vaccination almost, two weeks ago. She has been incredibly fatigued for the first 10 days or so and was feeling unwell for the first few days after the vaccination but seems to be back to her baseline now.
Thank you Dancingqueen62
I will pass this onto our policy and campaigns team.
Best wishes
Sarah
Dear Dancing Queen,
Thank you for sharing your experience.I am pleased that your sister is recovering from the vaccine and I hope is well at the moment.
Like you I always go with my brother if he has to go to any appointment. One of his support team was with him constantly during his two weeks in hospital. I was there every morning from 7am until 2pm and then my mother went every afternoon until end of visiting. Then one of the team stayed over night - in a very hard and upright chair. This was in 2019 before Covid 19. Nobody mentioned DNACPR and I did not look.
It pains me to say that I am sure having a strong family presence makes a big difference to the treatment that our learning disabled relatives experience in hospital. The members of my brother's support team, who are widely experienced are of this opinion. When a person with a learning disability is admitted to hospital Social Services do not automatically pay for the extra staff required to support the patients communication and social care needs. Health is free at the point of delivery so that they do not consider it a legal duty to fund round the clock support. Supported Living and Care Homes may be required to do this in the interests of their person, but they will struggle to get their costs covered by the local authority.
My brother was on an overstretched medical ward, the nursing staff could not have adequately cared for his social needs. The ward staff were very pleased that one of us was there all of the time, but the hospital could not provide us with any reclining chair, so for two weeks in a large university hospital one of the team had to spend all night on a hard, upright chair. It was a nightmare for my brother, not only was he ill but there were so many other difficulties that did not take into account his learning disability, mental health and social needs. A nightmare for the team, but we got him through this experience, looked after him at home whilst he recovered and got his white cell count back to within the normal range.
my brother's recovery from the traumatic event that knocked out a significant percentage of his white cells will be gradual. Although he looks and feels better his white cell count was 2.6 this week. Still dramatically lower than the 4.9 in December. Higher than the 2.5 just after the vaccination and seizure. The doctors agree that there is no underlying issue, however he is now more at risk from any infection than he was in December. Regular blood tests will provide evidence of how his immune system is responding so I at least have something to refer to. He has not had another seizure of any kind.
My best wishes to you and your sister.
Hello Samuel12
Thank you for post about this. I really appreciate you taking the time to share your experience with other people on here.
You and your family have done an amazing job supporting your brother. I am glad to hear that your brother is recovering.
Best wishes
Sarah
Hello
Thank you all again for posting on here about this difficult subject.
I have been in touch with our policy team who have asked me to post this.
Advanced care planning, including thinking about what treatments we may or may not want is very important, particularly when we are reaching the end of our lives - these decisions may include deciding on our wishes regarding resuscitation if our heart was to stop.
However, we have seen concerning examples throughout the pandemic of DNACPRs applied inappropriately to some people with a learning disability on the grounds of disability, alongside decisions about whether to deny critical care, such as a ventilator, on the grounds of support needs.
NHS England and the Department for Health and Social Care are taking this very seriously and we can report any instances of this happening so it can be addressed urgently - please do let us know if you have any concerns so that we can continue to help make sure people with a learning disability have equal access to care.
Many thanks
Sarah
I’ve heard a lot about this too but taken it with a pinch of salt. My son is at residential college so the house he lives in is a registered care home. We’ve not been asked about it.
How do you deal knowing your child/young person will always be vulnerable?
Hospital Experiences
Oral health care and dental services - what do you think? 
How often do you visit your sibling in care?
