The Nurse Consultant for Learning Disabilities at North Staffordshire Combined Healthcare NHS Trust led on the review of service provision and development of new multi-disciplinary team (MDT) approaches to care for people with learning disabilities and their families across the Trust. This programme of work has led to improved outcomes and experiences across the organisation.
Where to look
North Staffordshire Combined Healthcare NHS Trust is a provider of mental health, social care and learning disability services in the West Midlands. The Trust’s Community Learning Disability Health Team is a specialist single point of access for assessment, treatment and support for people aged 18 or over with a diagnosed learning disability. The MDT work with people with a learning disability who, due to complex physical health or psychological needs, may be at risk from exclusion from mainstream services.
Transforming Care: a national response to Winterbourne View Hospital (2012) highlighted that many people with learning disabilities or autism are staying too long in hospital or residential homes, and even though many are receiving good care in these settings, many should not be there and could lead happier lives elsewhere. The report also identified widespread uncertainty on the use of restraint, with over-reliance on physical restraint including sedation rather than positive behavioural support (PBS) and managing the environment to remove or contain the triggers which could cause someone to behave in a way which could be challenging. This is supported by Public Health England’s (2015) estimate that every day 30,000 to 35,000 adults with learning disabilities are prescribed an antipsychotic, antidepressant or both when they don’t have a mental health condition. These medications put people at increased risk of weight gain, organ failure and even premature death.
The Nurse Consultant for Learning Disabilities, with support from the community learning disability nursing team, identified a need to address unwarranted variation in medication prescription at the Trust, as well as the need to introduce PBS to support implementation of the recommendations of national guidance.
What to change
The National ‘Stopping over medication of people with a learning disability, autism or both’ (STOMP) campaign advocates for Positive Behavioural Support (PBS) as it supports people/carers to develop their skills and increase independence, using non-aversive approaches to behavioural challenges, with decisions based on facts and research. A formal assessment is made to create a clear structured plan of action; it ensures people are actively supported over the long term to maintain their quality of life.
The Learning Disability team needed to work towards the recommendations of the STOMP-LD campaign to reduce the use of medication prescribed to people with a learning disability. A refreshed approach was required to ensure the improved services provided the broad range of experience and expertise needed by those using their services and to reduce the current reliance on input from a Community Nurse or Consultant Psychiatrist.
How to change
The Community Learning Disability nurses, led by the nurse consultant, reviewed existing referral and clinical pathways, as well as service design and remit, identifying ways in which medication prescription could be addressed and PBS could be introduced.
A programme of education for carers was rolled out to ensure they were fully informed about the options available to them and their family members and to promote the awareness that all behaviour happens for a reason and behaviours of concern are no different.
A nurse led PBS clinic was established using evidence-based approaches to care to advocate (and implement) standardised assessments for all service users and an enhanced referral process. The Positive Behavioural Support pathway was developed which informed the structure of the clinics and staff training provided, based on the West Midlands Regional Framework for PBS competence in the workforce. The service supports development of positive and proactive plans as well as providing advice and support regarding behaviour, both for the people with learning disabilities, their families and staff working with them, to maximise an individual’s physical health, engagement and quality of life. The service works with service users, their family and carers to develop positive and proactive plans to improve the individual’s quality of life.
Better outcomes – To date, there have been 12 clinics to support the adult population with a total of 72 people being supported through the PBS pathway. The PBS pathway has been revised in the children’s community team and to date there have been a total of 18 clinics held. This has led to increasingly empowered individuals as well as improved discharge processes due to increased parental knowledge and confidence.
Better experience – Carer’s report feeling empowered and supported to implement proactive strategies as they now feel they have the skills, knowledge and support. The service supports carers to make positive changes and improve the person’s quality of life and reduce challenging behaviour. Quotes include:
“Fantastic trainers – I now feel more able to deliver PBS with the people I support.” – carer in a private provider.
Better use of resources – Following revision of the clinical pathways, there has been a reduction in waiting times, as well as reduced travelling time, which means more people can be seen.
Challenges and lessons learnt for implementation
Supporting carers and other professionals to develop their skills to manage situations is important in ensuring people with learning disabilities access consistently high-quality, person-centred services.
Engaging people in their own care is vital in providing personalised care to meet their needs; this needs to start right at the beginning and be at the centre of everything staff do.
Due to the success of the programme, the Trust is now engaged with the national STOMP-LD campaign and is an exemplar Trust in improving lives for people with learning disabilities regarding their medication.
For more information contact
Consultant Nurse Learning Disabilities & Clinical Lead for Learning Disability Services
North Staffordshire Combined Healthcare NHS Trust