• New research suggests a lack of training for health professionals could be contributing to 1,200 avoidable deaths of people with a learning disability happening every year*.
  • 38% of people with a learning disability die from avoidable causes, compared with 9% of the general population**
  • Treat me well campaign is launched with a report calling for Government and NHS to ensure no healthcare professional can set foot in a hospital without proper training on learning disability.

Almost a quarter of healthcare professionals have never attended training on how to meet the needs of patients with a learning disability, according to new research released today to launch Mencap’s Treat me well campaign; aimed at ending the scandal of unequal health treatment for people with a learning disability.

The new research from YouGov and Freedom of Information Requests to NHS Trusts has revealed that healthcare professionals and hospital trusts have been failing to make simple, reasonable adjustments to the care of someone with a learning disability that are legal duties under the Equality Act 2010 and can save lives.

A significant proportion of healthcare professionals surveyed (45%) believe a lack of proper learning disability training is contributing to the 1,200 avoidable deaths every year of people with a learning disability; that this issue does not receive enough attention from within the NHS (59%); and that they would like more training specifically focussed on patients with a learning disability (66%).

Ten years ago Mencap highlighted the issue of avoidable learning disability deaths, and in response to on-going concern since it was created NHS England has made learning disability a national priority. Mencap is calling for these efforts not to be made in vain by ensuring no health professional can set foot in a hospital without having had training on learning disability.

YouGov survey of more than 500 healthcare professionals revealed¹:

  • Almost a quarter (23%) of healthcare professionals have never attended training on meeting the needs of patients with a learning disability.
  • Over 1 in 3 (37%) healthcare professionals think the quality of healthcare received by patients with a learning disability is worse than that received by patients without a learning disability.
  • Almost half (45%) of healthcare professionals think that a lack of training on learning disability might be contributing to the avoidable deaths of people with a learning disability.
  • 59% think the issue of avoidable deaths does not receive enough attention from the NHS.

Freedom of Information requests sent to NHS Foundation Trusts and English universities offering courses in medicine, or adult nursing revealed²:

  • Almost half (47%) of hospitals do not include information on learning disability in their induction training for clinical staff.
  • Almost a quarter (22%) of universities do not include training on making reasonable adjustments to the care of someone with a learning disability (which are a legal duty under the Equality Act 2010) in their undergraduate medicine degree.

****Definition of reasonable adjustments in notes to editors.

Survey of 500 people with a learning disability revealed4:

  • Over 1 in 5 (21%) think that healthcare staff are bad at explaining things to them when they are at the hospital.
  • 75% said their experience of going to the hospital would be improved if staff explained things in a way that was easy to understand.

Nicholas Jones was just 27 years old when he was admitted to hospital and died less than one month later. A Coroner’s Court ruled recently the death was contributed to by ‘gross failures’ in care. Nick’s Mum Sue said:

"Our son Nick was a vibrant, happy, young man with a mischievous sense of humour. He was participating in new activities and had so much more to explore and achieve when he was admitted to hospital for an emergency kidney operation. 

“We desperately tried to raise our concerns with hospital staff about the poor care Nick was receiving on a daily basis - instead of listening to us and making reasonable adjustments to ensure Nick received the care he needed, staff dismissed our concerns and we were treated as a nuisance.  

“I had to continually repeat details about Nick’s medical condition, his needs, his abilities etc. and often left the hospital anxious and frightened that either there was no one available to care for Nick during the night, or whoever was there had no knowledge about him.

“On the day Nick died I persistently alerted staff on the ward to the fact that Nick was extremely unwell and repeatedly asked for a doctor to come and assess him. I could see the signs that Nick was deteriorating and pleaded with staff to act but was perceived to be a hysterical, over protective mother and no one took my concerns seriously. Nick suffered a respiratory and cardiac arrest and I was left alone to perform CPR on my son until the crash team arrived.

“We will never forget the sequence of events that led to Nick's preventable death. All we can hope for now is that Nick's death and the failures that led to it will show how vital it is for all health professionals to be trained in how to support patients with a learning disability and how crucial it is to work in partnership with family members and carers and to really listen to them - as they are advocates for all those without a voice. Hopefully, then future avoidable deaths of patients with a learning disability who are so vulnerable may be prevented."

Jan Tregelles, chief executive at the learning disability charity Mencap, said:

“Every day, three people with a learning disability die avoidable deaths.  Yet, a quarter of health professionals say they have never been given training on learning disability.  We all need to act to fix this.

“NHS England has made real efforts to improve care for people with a learning disability but this scandal has been well known over a decade, and families still contact us who believe their loved ones should not have died whilst in hospital care. 

“Government and NHS England must now ensure no healthcare professional steps foot in a hospital without having training on providing healthcare to people with a learning disability. We know health professionals want this too. No family should be left wondering whether or not their loved one could have been saved.”

Royal College of Nursing Chief Executive and General Secretary Janet Davies said:

“No patient should ever die or be harmed because healthcare staff haven’t had the right training to care for them properly.  Nursing staff want to be able to deliver the best possible care to every patient, but they need the right education to be able to do that.  Providers and commissioners of healthcare must offer every member of the nursing team training in how best to meet the needs of people with learning disabilities, and universities must meet their legal obligation to train student nurses in how to provide information for patients with learning disabilities in a way they can understand.  The scandal of 1200 avoidable deaths a year among people with learning disabilities must be halted”.

-ENDS-

For further information or to arrange interviews, please contact the Mencap press office on 020 7696 5414 or media@mencap.org.uk or for out of hours 07770 656 659.

Notes to editors

Information on the health inequalities suffered by people with a learning disability:

  • On average women with a learning disability die 18 years sooner, and men with a learning disability die 14 years sooner than the general population in England. ***
  • 1,200 avoidable deaths of adults and children with a learning disability in the UK every year. *
  • 38% of people with a learning disability died from an avoidable cause, compared to 9% in a comparison population of people without a learning disability. **
  • Barriers to equal healthcare for people with a learning disability include:
    • staff having little understanding about learning disability
    • failure to recognise that a person with a learning disability is unwell
    • failure to make a correct diagnosis
    • not enough involvement allowed from carers
    • inadequate aftercare or follow-up care.
    • patients not being identified as having a learning disability
    • anxiety or a lack of confidence for people with a learning disability
    • lack of joint working from different care providers.

* Glover, G. and Emerson, E. (2013) ‘Estimating how many deaths of people with learning disabilities in England could be prevented by better medical care’, Tizard Learning Disability Review, 18(3): 146-149.

** Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final Report. Norah Fry Research Centre.

www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf

NOTE: Mencap uses the term avoidable death for deaths that could have been avoided by the provision of good quality healthcare.

***NHS Digital (2017) Health and Care of People with Learning Disabilities: Experimental Statistics: 2016 to 2017. http://digital.nhs.uk/catalogue/PUB30167

****Under the Equality Act 2010 public sector organisations have to make changes in their provision of care to ensure they are as accessible to disabled people as everyone else. Known as ‘reasonable adjustments’ they are a legal right and for people with a learning disability can mean using more simple language or communication aids, allowing extra time for appointments or adjusting how someone is fed and can save lives. Our research suggests training on these for health professionals exists, but is not compulsory and many health professionals have never received training on them. Failure to provide them is what we believe leads to people with a learning disability receiving worse health outcomes than the rest of the population.

¹All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 506 adults who are UK public sector healthcare professionals. Fieldwork was undertaken 3rd-9th March 2017. The survey was carried out online.

²Requests were submitted under the Freedom of Information (FOI) Act to all English universities identified as offering an undergraduate or postgraduate course in medicine, or an undergraduate course in adult nursing. 72 FOI requests were sent to the relevant universities on 17th February 2017. On 31st May, 63 responses had been returned – an 87.5% response rate.

Separate FOI requests were submitted to all NHS foundation Trusts in England identified as providing acute care, plus several non-acute hospital trusts identified as ‘targets’ for the health campaign. 157 FOI requests were sent to the relevant hospital trusts on 16th February 2017. By 31st May, 118 responses had been returned – a 75.2% response rate.

³43% of universities who responded to our FOI request do not currently include training on the Accessible Information Standard in their undergraduate adult nursing degree; whilst 65% do not currently include this training in their undergraduate medicine degree.

4Mencap conducted a survey of 500 people with a learning disability who had previously been to hospital as a patient, and were over the age of 16. Fieldwork was undertaken between 10th March and 23rd June 2017. Data was collected through online and paper questionnaires.

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 help@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.

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.

Learning disability is NOT a mental illness or a learning difficulty. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’.