I have had a personal connection to Mencap for a long time. When I became a student nurse, however, I became even more acutely aware of how important their work is in the health and social care system – just one of the many reasons why I am so honoured to be part of their “Treat Me Well” Campaign.
Mencap’s work on tackling healthcare inequalities dates back to ten years ago, when they launched Death by Indifference, a crucial campaign in response to the ongoing, poor treatment of people with learning disability. This, in turn, led to the Confidential Inquiry into premature deaths of people with learning disabilities, which was conducted in the South-West.
Using the data from the Confidential Inquiry, Professors Glover and Emerson of the Improving Health and Lives Learning Disabilities Observatory estimated that there were 1200 deaths every year of people with a learning disability that could have been avoided through good healthcare and positive change.
The Confidential Inquiry led to the Learning Disabilities Mortality Review (LeDeR) Programme which was set up to investigate deaths on a national level and recommend improvements. In its first year of work it looked at over 1000 deaths, and conducted detailed reviews into over 100 cases.
Its first annual report was published on Friday 4th May 2018 and displayed shocking figures, notably that women with a learning disability are dying 29 years before women in the general population and men 23 years. Barbara Keeley MP – the shadow minister for mental health social care – has emphatically expressed her goal to insist on both the detailed review of more cases and a proactive approach to enacting crucial improvements.
And now, Mencap have launched their Treat Me Well campaign – a campaign I have become a proud and humble champion for. I have been tracking their work throughout my course, and was lucky enough to be selected for their promotional campaign video which calls clinicians across the NHS to action. There is a real drive for change, and we must demand the resources to do enact it.
The evidence that further resources and training is wanted and needed is plentiful. Mencap’s survey of 500 clinicians found that almost 1 in 4 had never attended any training specifically on learning disabilities, and 2/3’s wanted more training. 64% of them said that a lack of practical resources for themselves and their colleagues may also be contributing to the problem. Perhaps most concerning – more than a quarter thought negative attitudes towards people with a learning disability might be a contributing factor in avoidable deaths.
A group of us who have already signed up visited Parliament on Monday 18th June. It was such an honour to be included in this event, and hear speakers – from MP’s to Ministers to Activists – who are united in their passion to make urgent change.
Baroness Hollins opened the speeches with a stirring call to action, followed by Caroline Dinenage MP – the Minister for Care – who emphasised the importance of accessible information and communication. I was deeply inspired by Paul Blake and Debbie Wigley who do fantastic work within the LD team at Northampton General Hospital as well as contributing to national policy. Paul, who has a learning disability, plays an active role on the wards advocating for patients and educating staff. It was a shining reminder of training is so much more enhanced when conducted by someone with a learning disability. Mark Harper MP talked about his work as the Chair of the APPG on Learning Disability, and called all the MP’s and Lords in the room to take action on this urgent issue.
The most valuable part of the experience was meeting Mencap’s campaigners and activists who have learning disabilities themselves. I got to see Brendan again, after meeting him for the first time while filming the promotional video for Mencap. He was dressed as a surgeon for the occasion to fit with the ‘Healthcare’ theme, and was thrilled with how many people had come to listen. I chatted to Barbara, who has Down’s Syndrome, about her work with Mencap in Belfast and how she’s been living independently in her own flat for two years now. (We also realised we both have two brothers getting married this year!).
While a significant part of this campaign includes celebrating exemplary care, it recognises that there is still much work to be done. I think what we, as nurses, need to remind people is that we are not asking for a huge amount. Small reasonable adjustments make a big difference. We have to ask for the training and resources to provide them. We can make that vital difference.
More information about the campaign:
This campaign wants to tackle the problems of a lack of education, awareness and experience. It’s identified 6 key steps to improving care, and is recruiting champions to campaign for it in their various workplace:
- Compulsory learning disability training for all hospital staff, which meets the Treat Me Well minimum standards.
- Sufficient resources for staff, including time to attend training and the necessary resources to make reasonable adjustments for people with a learning disability.
- Strong Leadership from the government and the NHS to ensure eradication of healthcare inequalities for people with a learning disability remains a national priority.
- Making communication accessible for all.
- Allowing extra time in appointments. Longer appointments are an important adjustment to help ensure that people with a learning disability have time to communicate, understand information and have the support they need to make decisions.
- Providing written information in an accessible format. Easy Read information can enable people with a learning disability to understand when their appointment is or how to take their medication.
Do visit Mencap’s website for more information on the campaign and how you can take part.
Written by Lily Parham
(Graphic from the Mencap Website)