Mencap is marking Profound Impact Day, 21st May 2019, by launching new tools, in partnership with families, PMLD Link and PAMIS, for healthcare professionals which it says will save lives

Mencap has launched these resources on the same day as the publication of the third Learning Disabilities Mortality Review programme report, which highlights the shocking levels of health inequalities for people with learning disabilities within our healthcare system.

Leroy Binns, Campaigns Assistant at Mencap who has a learning disability,

“Far too many people with a learning disability die avoidably each and every year, when they could have been saved if they got good quality health care. People with PMLD are at high risk in hospital, and can even die unnecessarily, when the people who are looking after them don't know how to meet their additional needs. I have a mild learning disability and I am passionate about making sure people with PMLD get to live long and healthy lives. This Profound Impact Day, we are launching new guidance which will help healthcare professionals feel more confident about working with people with PMLD. This will improve people with PMLD’s experience of going to hospital and will ultimately help save lives. We want to help healthcare professionals and the people who know the person with PMLD best, to work hand-in-hand to ensure that patients with PMLD get the best possible healthcare.”

Dr Emmy Dickens, Consultant at Addenbrooke's Hospital Cambridge, says:

"As a NHS doctor, I have seen examples of both really excellent and also disappointingly poor practice in the care of people with profound and multiple learning disabilities (PMLD). It is crucial that healthcare professionals work in partnership with the people that know such individuals best, whether that's a parent, family member or carer.

“Most healthcare staff will have only rarely looked after people who have PMLD. This new guidance will help hospital staff to understand the type of reasonable adjustments they may need to make and give them the confidence to advocate for the best care for this group of vulnerable patients. If we take the time to listen, ask appropriate questions, read documents such as hospital passports and make simple changes then we stand a much better chance of getting things right, and we know that will save lives."

There are at least 30,000 people with PMLD in the UK[i] and the number of people with PMLD is growing[ii]. People with PMLD have more than one disability, which can include sensory and physical disabilities, complex health needs or mental health difficulties, have high support needs and unique ways of communicating.

Sue Cawkwell, whose son Josh is 28 years old and has PMLD, knows just how important it is for healthcare staff to work closely with the person's family. She says:

“Josh has PMLD including cerebral palsy, visual impairment, a profound learning disability, and epilepsy. He has had many hospital admissions including planned surgery and unplanned medical emergencies. When a patient cannot speak or indicate why they are unwell it becomes very difficult for doctors to quickly address the problem and it becomes increasingly vital that health professionals have regular and consistent input from parents and carers.

“During one six month hospital stay, we had a particularly bad experience: the surgical registrar changed weekly and many had differing opinions, ward rounds were unpredictable in terms of timings and nurses changed frequently. Josh's carers also changed often. As his mum, I was the only person who saw him daily and had the full picture. It would have been so helpful to have been able to speak to the registrars and consultants on a more regular basis. A meeting after admission with the nursing staff, myself and Josh’s carers would also have helped enormously to agree who did what and what support might be needed. Little things often make all the difference."

Robert Spigel, whose daughter Eléonore has PMLD, knows just how helpful these new tools will be. He says:

“The worst experience we had with Eléonore happened about 15 years ago. She was taken to hospital with a broken leg after falling due to a seizure, and we needed help to change her. When a male nurse turned up, we asked to have female staff instead but the matron, a senior staff, said “Well, your daughter is not going to notice the difference, is she? It shocked us how little regard the person had for Eléonore as a person and how much she had assumed just by looking at her. How the healthcare professional relates to Eléonore is what makes all the difference.”

The resources, including a guide and video produced by PAMIS to create a multi-sensory story to help someone with PMLD prepare for a trip to hospital as well as a practical checklist for family members, support staff and all healthcare professionals, are available to download from Mencap’s website here. The resources will be sent to 2,500 of Mencap’s Treat Me Well Champions, healthcare professionals campaigning alongside Mencap to change and improve hospital care for people who have a learning disability.

Annie Fergusson, Trustee and Member of the Editorial Group PMLD LINK, said:

“The new resources launched today offer a much-needed opportunity to improve the lives and health outcomes of people with profound and multiple learning disabilities.

“The importance of hospital staff working together with families and support staff is a key feature of these resources – essential because people with PMLD are such unique individuals and in recognition of their holistic vulnerability. Their families and support staff, who know them really well, can share vital insights and information with hospital professionals to help interpret their health symptoms and signpost the best ways to access treatment and care.”

PAMIS CEO Jenny Miller said:

“It is great to be working collaboratively with partner organisations to ensure we support people with profound and multiple learning disabilities and their family carers to highlight the specific care required when visiting an acute hospital. If we really listen to both the individual and their family carers, working in partnership with them, then we will begin to address the stalk health inequalities. I hope that Profound Impact Day enables us all to share, shine a light on best practice and make a real difference to the hospital experience for this group of people and their families."

-ENDS-

For further information or to arrange interviews, contact the Mencap press office:

  • Tel: 020 7696 5414.

Notes to editors

About Mencap

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want. www.mencap.org.uk.

For advice and information about learning disability and Mencap services in your area, contact the Learning Disability Helpline on 0808 808 1111 (9am-5pm, Monday-Friday) or email helpline@mencap.org.uk.

What is a learning disability?

  • A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life;
  • Learning disability is not a mental illness or a learning difficulty, such as dyslexia. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’
  • People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.

[i] Professor James Hogg (2009) Changing Places Toilets: Estimates of potential users

[ii] Eric Emerson, (2009) "Estimating future numbers of adults with profound multiple learning disabilities in England", Tizard Learning Disability Review, Vol. 14 Issue: 4, pp.49-55