Analysis

Learning disability nurses are key to improving care, finds NIHR report

A review by the National Institute for Health Research outlines ways to improve health for people with learning disabilities
A patient with learning disabilities and a dental nurse. Picture: Tim George

A review by the National Institute for Health Research outlines ways to improve health for people with learning disabilities

  • People with learning disabilities have higher risk of emergency admission than the general population
  • Problems exacerbated by loss of 2,300 learning disability nurse posts since 2009
  • Uptake of annual health checks with GPs need to be increased and community teams are key
23

different studies reviewed for the report

Source: National Institute for Health Research

What progress has there been in improving care and tackling health inequalities for people with learning disabilities and what still needs to be done?

Looking for some answers the

...

A review by the National Institute for Health Research outlines ways to improve health for people with learning disabilities

  • People with learning disabilities have higher risk of emergency admission than the general population
  • Problems exacerbated by loss of 2,300 learning disability nurse posts since 2009
  • Uptake of annual health checks with GPs need to be increased and community teams are key
 Tim George
More people with learning disabilities should be having an annual health check
Picture: Tim George

23 

different studies reviewed for the report

Source: National Institute for Health Research

 

What progress has there been in improving care and tackling health inequalities for people with learning disabilities  and what still needs to be done?

Looking for some answers the National Institute for Health Research (NIHR) reviewed 23 studies, drawing up conclusions and recommendations across four themes:

  • Identifying health risks
  • Well-being
  • Hospital safety
  • Care in the community


Jean O'Hara

 

Former NHS England learning disabilities national clinical director Jean O’Hara, who helped compile the NIHR themed review, Better Health and Care for All: Health and Care Services for People with Learning Disabilities, says there is much to celebrate as well as lessons to be learned.

‘The past 30 years has seen big changes. This includes a move away from long-stay hospitals to supporting people to live well in the community,' says Dr O'Hara. 'But it’s not easy – we still have a long way to go.’

Treatable conditions often go undiagnosed leading to a higher risk of emergency admissions

It is well documented that people with learning disabilities have a higher risk of emergency admission than the general population.

An important cause of this, the NIHR review says, is treatable conditions such as respiratory and urinary infections going undiagnosed.

The review states that annual GP health checks can make a big difference, but points out that only 55% of people with learning disabilities get them.

‘An estimated 1,200 die avoidably every year due to missing out on healthcare they need’

Dan Scorer, Mencap

The NIHR wants community learning disability teams to work more with GPs – evidence suggests practices do not always have the right skills and training.

It is also well known that service users’ general health – physical and mental – is poorer than the rest of the population.

The NIHR says one of the reasons for this is that mainstream services, from dentistry and sexual health to weight loss clinics, are not always making necessary adjustments. The key to achieving this, it says, is involving people with learning disabilities and their carers in designing services.

But some of its strongest criticism is reserved for the lack of progress made by general acute hospitals in identifying people with learning disabilities and keeping them safe. 

It notes several inquiries and reviews have continued to warn about avoidable deaths. Having learning disability nurses on hand was found to make a ‘valued contribution’, but they were not always available and there are not enough.


Dan Scorer

Compulsory awareness training can make a difference

Mencap head of policy Dan Scorer says the introduction of mandatory learning disability and autism awareness training for all NHS health and social care staff will make a difference. Pilot work is due to begin later this year. 

Mr Scorer says: ‘We cannot stress enough the importance of this – an estimated 1,200 die avoidably every year due to missing out on healthcare they need.’

‘People with learning disabilities are often unable to say why they do things. Guessing and meddling can make things worse’

Jonathan Beebee, RCN

55% 

of people with learning disabilities had GP health checks in 2017-18

Source: National Institute for Health Research

RCN learning disability nursing forum chair Jonathan Beebee agrees the training will be helpful and hospital liaison roles are too patchy.

But he says the true problem lies in the loss of 2,300 learning disability nurse posts since 2009, which has hit community teams particularly badly.

‘Most people will be living independently with support or with families,' he says. ‘It’s not so much about getting it right in the hospitals, it’s more about getting skilled social care with learning disability nurses to proactively address these issues and rebuilding community teams.’

The latter point is particularly relevant for the fourth element of the NIHR review – support in the community.

The review welcomes the move away from long-stay inpatient settings, as part of the Transforming Care programme, but says progress has been ‘slow’ and the challenge ‘underestimated’.

It warns there still does not seem to be the services available in the community to support those with challenging behaviours. 

How small adjustments can make a difference

A man in his twenties with learning disabilities needed a cyst removed from his forehead. His parents were worried he would become distressed waiting alongside other patients. With the help of the hospital’s learning disability liaison nurse, a private room was found for him to wait and prepare for the operation. 

An optician was praised for the support provided to one client with learning disabilities. The client has been coming for several years and had become comfortable with staff. They now attend appointments on their own with staff writing notes in the individual’s diary for their carer.

Source: National Insititute for Health Research examples of good practice

 

Positive behaviour support

Jonathan Beebee
Jonathan Beebee

 

The review acknowledges that positive behaviour support (PBS), which is recommended by the National Institute for Health and Care Excellence, is accepted as good practice.

1 in 5

adults with learning disabilities has ‘challenging behaviours’

Source: National Institute for Health Research

But the review points out that, while studies have shown the approach to be effective in NHS and residential care settings, its wider use in the community is still uncertain. This, it says, could be related to the skills and motivation of staffing using it.

Mr Beebee says PBS is sometimes ‘misapplied’ and better training is needed.

‘The key is the science. People with learning disabilities are often unable to say why they do things. Guessing and meddling can make things worse,' he says. 

‘If someone is punching themselves in the face repeatedly, it doesn’t matter how many times you take them to McDonalds if you haven’t identified they are doing this because they have dental pain or it’s the best method to get attention.’


Nick Evans is a health journalist
 

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