Learning disability standards kept simple in bid to drive improvements

NHS Improvement unveils a simple guide to improve learning disability care standards

 NHS Improvement unveils a simple four-point guide aimed at improving learning disability care standards

Learning disability liaison nurses can make all the difference to patients in hospital. Picture: Barney Newman

NHS Improvement’s new learning disability improvement standards are not about quantity – there are only four of them – but they could be transformative if services respond as the regulator hopes.

NHS Improvement’s head of learning disability David Harling says the standards have been designed to be simple and easy-to-use on purpose.


New NHS Improvement standards for services

‘We wanted them to be effective and so we had to create something to the point. We’ve included practical advice and real life examples to make it clear what is expected.’

The standards include three – respecting and protecting rights, inclusion and engagement, and workforce – points that apply to all services in acute, mental health and community trusts. The fourth is aimed squarely at specialist learning disability services.

NHS Improvement is clear that care has not been good enough for people with learning disabilities and autism, acknowledging their needs have been ‘misunderstood or responded to inappropriately’ and that there are cases where patients have suffered ‘grossly impoverished quality of life’ and ‘preventable, premature death’.

'We want to see change'

David Harling

Mr Harling says he started developing the standards as soon as he was appointed in September 2016, at time when services were in the headlines for all the wrong reasons following the Winterbourne View scandal and Mencap’s Death by Indifference report.

‘Improvement needed to be made – trusts were struggling. The key now is how they respond. We want to see change,’ he says.

The standards have been designed with the Transforming Care for People with Learning Disabilities and the Learning Disabilities Mortality Review programmes in mind.

They have been produced as other parts of the UK have also tried to make improvements. Wales has published its own guidance – the Improving Lives Programme, and Scotland has its Keys to Life strategy, which looks at similar topics. The formation of a dedicated set of standards for the NHS in England is perhaps a reflection of the acute pressures being felt there.


Number of pages of advice, information and best practice examples in the document

Mr Harling believes the standards set out an ambitious vision for high-quality and compassionate care. For example, standard one – respecting and protecting rights – challenges services to create flexible approaches to communication, triage and appointments, and standard three – on workforce – is clear staff numbers may have to increase.

But while they have been broadly welcomed by the sector, senior learning disability nurses do have concerns.

RCN professional lead for learning disability nursing Ann Norman says: ‘The principles are good and aims are to be supported.

‘The difficulty is that the workforce section presents us all with some challenges given the dramatic decline in learning disability nursing expertise.’

Learning disability nurse and director of PBS4 social enterprise Jonathan Beebee agrees. He is concerned the standards effectively give permission for a drop in registered learning disability nurses by recommending other nurses are supported to improve their skills.

‘You can’t replace a three-year nursing degree that is 100% about nursing for people with learning disabilities by providing a bit of awareness training to everyone.’

Liaison nurses

However, Mr Harling disagrees, arguing for acute trusts it is ‘absolutely’ the case that appointing learning disability liaison nurses is vital to being successful.

If that is the case, there is some way to go, says independent learning disability nurse consultant Debra Moore. ‘Not every hospital trust has a learning disability nurse – there are real shortages. It’s obvious that, where you have good practice, there is invariably a learning disability nurse in the picture. Where things go wrong for individuals and their families in mainstream services there is often an absence of a learning disability nurse.’

She says, while the standards are ‘very sensible’, the workforce problems may mean the standards are not met as widely as they should be. She also has concerns about how services will be held to account, calling for the Care Quality Commission (CQC) to incorporate them into its inspection regime.

‘It is the only way they will make a difference – especially given a lot of specialist services are run by the independent sector not the NHS,’ she says.

Improvement hub and toolkit

15 to 20

Number of years earlier that people with learning disabilities die compared to general population

Mr Harling says talks have already started with the CQC about this, but other steps are being taken to ensure they have an impact. An improvement hub has been launched to showcase best practice and, in September, an improvement toolkit will be launched requiring trust boards and clinical leads to report annually about how they are doing using a traffic light rating system.

Families will also be asked to report using a sliding scale that toggles between a happy and sad face. He says this will give a ‘rich picture’ and help ‘shine a light’ on gaps.

‘I’m sure it will be a vehicle for progress,’ concludes Mr Harling.

The four standards

1. Respecting and protecting rights (all services)

In practice this means:

  • Meeting requirements of the Equalities Act 2010 and Human Rights Act 1998
  • Flexible approach to communication, triage and appointments
  • Flagging up patients with learning disabilities from admission to discharge

Good practice example: 

A 52-year-old man needed examining for an enlarged testicle. His GP was unable to fully examine him so James Paget University Hospitals NHS Trust sent consultants to his home. He was anaesthetised with a carer beside him and transferred to hospital for examination and treatment.

2. Inclusions and engagement (all services)

In practice this means: 

  • Patients and families empowered to be partners in care
  • Attitudes, behaviours and communication expected from staff made clear
  • Involving people with learning disabilities in staff recruitment and reviewing services

Good practice example: 

Sandwell and West Birmingham Hospital NHS Trusts has worked with the charity, Changing Our Lives, and people with learning disabilities to review the quality of care. One of the changes made is the appointment of a learning disability liaison nurse.

3. Ensuring workforce has skills and capacity (all services)

In practice this means: 

  • Understanding local need and using this to determine staffing
  • Training staff in learning disability and autism awareness, health issues, human rights and mental capacity
  • Dedicated lead for learning disabilities
  • Exploring need for new roles, such as advanced practitioners

Good practice example: 

Norfolk and Suffolk NHS Trust worked to improve the skills of staff in mental health services. A learning disability nurse was seconded to work with teams and champions are now in place among staff, service users and partner organisations to share ideas and promote best practice.

4. Specialist learning disability service policy and standards

In practice this means: 

  • Having plans to develop intensive community-based support
  • Using the Care and Treatment Reviews and Care and Education Treatment Review processes to ensure services are fully compliant
  • An assertive approach to discharge planning

Good practice example: 

Oxford Health NHS Foundation Trust’s specialist learning disability service surveyed people and their families admitted to inpatient beds out of area to inform what more they needed to offer locally.

Further information

The Learning Disability Improvement Standards for NHS Trusts

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