NHS Outcomes Framework Indicators 2018 - LD

[chissylou]

You may have seen in the news that 13 people with ld were recently ruled to have lost their lives prematurely due to poor health care. This is exactly why we need an NHS indicator for ld.

In 2016 Chris Heaton Harris raised a PQ asking why the learning disability mortality indicator had been set at 60 years old, whereas it was 75 for the rest of us. At the same time I wrote to my MP and DH. I was told it would be looked at again.

The 2018 indicators have been released by NHS Digital and LD has not been brought into line. It is missing.

I emailed NHS Digital and they told me it was included under severe mental illness. This indicator did not mention ld anywhere within the text and even so, these two things should not be grouped, they require separate indicators and attention.

You may wish to contact your individual MPs about this. We need to make sure our loved ones are looked after to the same standard as the rest of us. It feels like their deaths are not viewed as seriously because their lives are not valued as much.

[alanwpickup]

Also if you want to get more involved in improving the situation the LeDeR program (Learning Disabilities Mortality Review) administered by Bristol University hold regional meetings where NHS, Social Service and Family carers can work to improve the situation. I recently attended the North West Event run by NHS England as a family carer.

Their website is http://www.bristol.ac.uk/sps/leder/ or facebook www.facebook.com/lederteam also checking NHS England events can give you information about seminars and training around LeDeR and LD in health https://www.events.england.nhs.uk/events

[frances_is_a_sibling]

Hi @chissylou thanks for posting this. I agree - severe mental illness and learning disability should not be grouped on the indicator - they need acknowledging separately. “It feels like their deaths are not viewed as seriously because their lives are not valued as much.” - I feel the same, and feel this is evident across the lifespan of a person with disabilities (and their families) - that the health and social care welfare system as a whole, undervalues the lives of people with learning disabilities and severely limits their quality of life.

Hi @alanwpickup, thank you for this info - how was the event you went to? Did you feel listened to?

[alanwpickup]

Yes I felt like we were listened to and it was good to hear of some of the steps both primary and secondary care are taking to improve the situation. The lead Nurse for LD at our hospital in East Lancashire is very dedicated to improving the experience of people with LD when in hospital and investigated the case of a young man who passed away in hospital, but the underlying cause went back before to changes in his routine and losing a job he had held for a number of years. We have a group in the NW that go to universities and speak to trainee clinicians about people with LD and their experiences when going for checkups and when they are having medical problems. We still have a long way to go, but I feel things are improving.

[Chris]

Dear chissylou,

If you have a template letter to your MP, I would very much like a copy so I can personalise it and send it to my local MPs and councillors; My email address is below.

I share your concern of the premature death of people with learning difficulties as I have a vulnerable adopted brother with autism and learning difficulties who I firmly believe will be a victim of early death due to the inadequate care and support he continues to be provided with by The Priory Group. The local authority (Herefordshire Council) have wilfully ignored or disregard concerns, which I continue to seek redress for.

Almost one year on from a best interest meeting in July 2017, which his G.P. and paid RPR refused to attend, and where institutional abuse was identified by the professionals present, it was decided my brother would move back in county closer to his frail elderly mother and me, and by December 2017. Unfortunately, we were deceived, and nothing has happened.
He remains significantly overweight, with inaccurate documented care records and has become alienated from his family due to the confiscation of a mobile phone almost six months ago, and which the provider have given two conflicting story for its removal from my brother.
The local authority to date has assisted the provider in continuing the institutional abuse of my brother.

Further, my brother’s G.P, wrote to me some time ago requesting that I do not raise health concerns with them directly, they are also alleged to have declared they do not have time to chase the residential home as they are only a small practice.
I have little regard for a practitioner who considers a person with learning difficulties in a residential home of less importance than that of another individual that is more able.
I had previously made his G.P. aware of the homes misuse of Diazepam, not the only occasion of drug or medication concerns.
All this is just part of a long list of incidents and concerns which I believe will contribute to my brother’s possible premature death.
If I can prevent such, and get my brother moved to satisfactory care and support, it may, in turn, help others like him in the same situation and they may not be a victim of premature death.

Please share the website and blog detailing the inadequate care and support provided to my vulnerable autistic brother by Herefordshire Council and The Priory Group. Thank you.

blog - While in Care

care and support provided to my adopted brother inadequate

For the secure site of whileincare.info please use https before www
https://www.facebook.com/whileincare.info

[chissylou]

Hi. Sure, here is what I wrote:

"In January 2016 Chris Heaton Harris raised a very pertinent PQ: “to ask the Secretary of State for Health, for what reasons the age at which the death of people with learning disabilities is classified as premature has been set at 60 in the draft NHS outcomes”

Around this time I also wrote to my MP - then Dominic Raab - various other MPs and the Department of Health, and was told by Alastair Burt that it would be looked at again.

In the February 2018 release, link in email trail below, rather than being brought into line, learning disability just isn’t there anymore. Not good given the last release admitted (and almost entrenched in policy) that they were a group who die prematurely.

As you will see in the email trail below I emailed to check I hadn’t missed anything and was told they were included under the indicator 1.5 umbrella of mental health problems. This is rather like grouping the diabetics with the cancer sufferers.

These are very different groups with different challenges worthy of individual attention.

I wonder if you could raise this with the DH?

I will in the interim raise this with Mr Heaton Harris, my own MP, the disability APPG and direct with the DH.

With thanks for your time and the very best wishes"

I already got a reply from the APPG saying they will see what they can do, which is positive.

Here is a link to the indicators and to the one I was pointed to

Thanks and also for sharing your blog, I will read now

[alanwpickup]

It seems such a shame that what you are experiencing seems to go against the recommendations of the Winterbourne Report. There seems to me always to be a gap between what is NHS and what is Social Services responsibility, although in essence these two should become one by 2020, I think.
I am not sure which camp your brother fails into? You refer to Learning difficulties rather than Learning Disability and this can change the treatment so much (unfortunately). Many people with ASD do not get on the Learning Disability Register. Without fully understanding what type of support your brother is receiving it my be that a Care & Treatment Review can be requested [NHS England Care & Treatment Reviews] or have the CQC been involved in inspecting the home? Have you involved Hrefordshire CCG under their Transforming Care Plans [Hereford CCG] hope these links show up. Regards Alan
https://www.england.nhs.uk/learning-disabilities/care/ctr/ctr-policy-changes/
https://www.herefordshireccg.nhs.uk/who-we-are/publications/strategies-and-plans/transforming-care

[jo.davies]

Hi everyone,

It’s really interesting to read your posts - I work in the Campaigns team at Mencap and we too read the latest LeDeR report into premature deaths of people with a learning disability with dismay. You can see our statement here, if you’re interested.

You might have seen our new campaign, Treat me well, which is all about improving acute hospital care for people with a learning disability. We believe the NHS can transform the care it gives to people with a learning disability by making reasonable adjustments, which are often simple changes that can make a big difference. You can sign up to hear more about the campaign here.

The work you’re doing in contacting your local CCGs, MPs and councillors is so important in keeping this issue on their radars - and urging them to take urgent action. Do let me know if there is anything we can do to support. By working together, we can make sure people with a learning disability live longer, healthier lives.

Thanks,

Jo

[frances_is_a_sibling]

Hi @alanwpickup, really great to hear that you were listened to. In my experience some of these events can feel like ‘box ticking’ - they are held so that they organiser can say that they have consulted others, but they have already made up their minds about their next path forward and don’t actually intend on listening to those who attend. It’s good to hear that this wasn’t the case for you, and especially that there is a passionate member of staff in a lead position who can help to make ‘the talk happen’. Groups that speak at universities to training clinicians are invaluable and I hope this kind of intervention will help to change cultures and attitudes over time. It’s a shame this hasn’t always been included in training, but it is indeed progress that it is now.

[frances_is_a_sibling]

Hi @Chris, I’m so sorry to hear of the desperate situation your brother is in and the repeated failures you have been all been subjected to as a family. What support do you have as a sibling? Thank you for sharing the blog, I think this is really important to raise awareness and to keep a log of the progress (or lack of) around the situation. I think the timer is particularly poignant and could help others reading it to consider how they would feel if they were denied access to contact with people closest to them. I echo what @alanwpickup has said, in that I think it could help to inform CQC of the institutional abuse so they can investigate. Also - if you have already been through a formal complaint procedure with The Priory Group or with the local authority and have still received a final response from them, you may be able to ask an ombudsman to investigate the complaint procedure and to look at how they came to that outcome? If you are still in the process of persuing a formal complaint with The Priory Group/local authority then you won’t be able to have an ombudsman involved just yet, I believe it’s only once you’ve had a final reply to that process that they can start to investigate. Keep in touch and let us know how the process goes.

[frances_is_a_sibling]

Hi @jo.davies thanks for highlighting the campaigns, I’m following Treat me well. As both a health professional working in an acute hospital myself, and a sibling of a brother with severe learning disabilities who is non-verbal and has had repeated hospital admissions due to his epilepsy - the campaign is very relevant to me.

[Chris]

Dear chrissylou,

Thank you for the prompt response and info, I will attempt to draft something to my local MP’s.

Regards
chris

[SarahL]

Hello @chissylou

Did you hear back from your MP about this?

Cheers
Sarah

[chissylou]

Hi. I had a reply from him but it was so vague I don’t even remember it. I was in touch with the APPG for disability and they asked a question in parliament for me:

“To ask the Secretary of State for Health and Social Care, for what reason people with learning disabilities have been placed in the category of adults with serious mental illness in the Excess under 75 mortality rate data set in the May 2018 release of NHS Outcomes Framework Indicators.”

We received the following answer:

“The Excess under 75 mortality rate dataset defines adults with serious mental illness as “those who have been in contact with secondary mental health care services in the past three years”. This definition has not changed since the indicator was established in June 2012. The data is, however, taken from the Mental Health and Learning Disabilities Dataset, which cannot distinctly divide activity into mental health or learning disability spells of care. This is because many people who have a learning disability use mental health services and people in learning disability services may have a mental health problem, so a single spell of care may include either or both types of service.”

They asked me for my thoughts and I reiterated that the two categories need their own indicator and that anyone could use mental health services so it is a weird merge. I haven’t heard further and given that everything is wall to wall brexit at the mo in parliament, I am not hopeful of a resolution.

[SarahL]

Thanks for sharing this @chissylou. It is amazing to have a question asked in Parliament - well done.

It might be worth going back to the APPG to see if they are looking at this any further.

cheers
Sarah

[MatthewH]

Thank you for posting the Government’s response and we are also concerned at the combination of mental health and learning disability in datasets. Too often statistics on people with a learning disability are combined with other conditions or are lumped under other conditions such as mental health as in this case.

I can assure you that we do raise this issue on a regular basis with various Departments including Health and Social Care and will continue to do so.

In the meantime, we are expecting that as learning disability and autism is one of the four priorities for the NHS in its new long-term plan (to be released soon) datasets will begin to more accurately capture data around people with a learning disability.

We are also in regular contact with the Minister for Social Care regarding the appalling statistics revealed in the Learning Disability Mortality Review. The review has been crucial in beginning to understand the scale of the health inequalities faced by people with a learning disability and why many are dying far too early from preventable causes. This review is giving us, and importantly the Government and NHS, statistics solely regarding people with a learning disability.

Overall, we hopefully moving closer to getting accurate and purely learning disability focused statistics. I hope this answer is helpful and do let me know if you have any other questions.

Thanks,

Matt Harrison
Parliamentary Affairs Officer

[chissylou]

Thanks for this. Good to know!