Profound and multiple learning disabilities: setting standards of care

Introduction

In his report Raising our Sights, Jim Mansell (2010) found that families of people with profound and multiple learning disabilities (PMLD) often struggled to get the services and support they need and faced discrimination, prejudice and low expectations. Yet in the years after his report, little changed and the needs of this group were not being sufficiently addressed.

Through our work at Achieve together – a social care provider organisation – we knew that people with PMLD lack presence and voice. There was under-representation of this group at all levels with little opportunity for networking and advocacy. Discussions with other partners revealed an appetite nationally for greater networking and sharing of best practice with collaborations between families, advocates, and health, education and social care services.

Developing service standards

Noting the absence of any formal benchmarking of what ‘good’ looks like for supporting people with PMLD, our nurse-led team collaborated with Dr Thomas Doukas, who was then at Choice Support, Annie Fergusson, then senior lecturer at the University of Northampton and editor of the PMLD Link journal, and Joanna Grace, founder of Sensory Projects, to develop core standards (Doukas et al, 2017). We invited family members, health, social care and education professionals to take part in creating the standards with the guiding principle that regardless of age and circumstance, those with PMLD receive excellent support and services consistently and are always respected.

A draft version of the standards was piloted in some residential school and college settings before the final document was launched at a conference in 2017. They were supported by NHS England and former health minister Norman Lamb for providing an important framework for organisations to ensure a clear vision for their support of this population.

Designed to be used by educational, health and social care providers, it was hoped they will be adopted nationally as a way of committing to and self-assessing whether services are providing consistently good practice in all settings. Application of the standards should lead to enhanced quality of life and improved health outcomes for people with PMLD.

The seven organisational standards are based around: leadership; quality; staff development; physical environment; communication; health and wellbeing; and social, community and family life. For each standard, we outline in detail what good practice in this area means and how to make sure it is happening.

There are also standards for individuals providing care or services covering: communication; health and wellbeing; meaningful relationships; social and community life; meaningful time; and transitions (with a focus on transition to adulthood but it could mean any form of transition in a person’s life).

“This has been a passionate driven development about improving the lives of everybody involved”
(Judges’ feedback)

Implementation

To share this work, we organised a series of ‘Raising the Bar’ conferences for families, advocates, and health, social care and education professionals at which best practice was discussed and networks formed. This has also enabled us to spread knowledge of the service standards more widely and talk about how to put them into practice.

In addition, our nurse-led health and wellbeing team is committed to changing the status quo for people with PMLD through the implementation of the standards within our own provider organisation.

Internally, we established a best practice forum with an open invitation to all employees. Focusing on the key elements of the service standards, the forums enabled us to develop clear action plans linked to each of those elements, for example:

• Leadership – to ensure commitment within all levels of the organisation;
• Staff development – to ensure staff had access to training on the holistic needs of the people they supported;
• Communication – to maximise each person’s communication ability and our understanding of their needs/wants;
• Social, community and family life – to ensure people were supported to develop and maintain strong social and community networks;
• Health and wellbeing – to recognise that people with PMLD often have multiple long-term health and mobility issues, which affect their lifestyle and quality of life.

In addition, we developed a PMLD qualification for support teams to improve understanding of the needs of people with PMLD and how to maximise quality of life.

Advocacy

We have also been working to support people with PMLD to have more control over their lives, with greater visibility and a voice through dedicated self and peer advocacy work.

The team worked with self-advocacy group Campaign 4 Change to enable people with PMLD and their families to overcome health, mobility and communication barriers to ensure they have a stronger voice and presence both internally in the organisation and nationally. Meaningful and active engagement in such groups requires meticulous planning, intensive support, protection of body shape and physical health, time, and space to communicate and listen – and the skill to interpret the thoughts and feelings of people involved.

The key aims of this initiative are to raise the profile of this group and ensure their needs and wants are not neglected or taken for granted. For any of us to enjoy a healthy and meaningful life with good mental health, it is important for us to feel valued and included.

We asked Learning Disability England if people with PMLD could present at their national conference in 2020 to show they should be ‘at the table’. The organisation, preparation and presentation took significant planning but we showed that people with PMLD can successfully overcome challenges and barriers to have an active voice. This meant so much to them in terms of quality of life, as well as a sense of pride for their families, and hopefully can change public perceptions. The sister of Samir El-Ziftawy, one of those who presented, said:

“Involvement in Campaign 4 Change has made a huge difference to him personally. I feel it has given him a sense of meaning, and greater chance to socialise with a wider group of people. It gives him a good chance to take part in society and have a good impact on making changes for himself and others with PMLD.”

Our learning on self and peer advocacy has also been shared through a Learning Disability England webinar and a presentation at the IASSIDD European Congress.

Next steps

Through our PMLD forum, we continue to ensure our supported living and care homes for this group increase their expertise and embed the standards in their practice. From the start, this has been done in collaboration with the people supported and their families, and this will continue.

This year, we will be inviting families to be an integral part of our forums working in even closer partnership. The self-advocacy network we set up had limited impact during lockdown but as restrictions on movement are eased in care settings and nationally, our work will expand. We will also be reviewing the standards and relaunching the updated document at a conference. We are constantly working to raise the profile of the standards. We are also doing work to put pressure on regulators, such as the Care Quality Commission and Ofsted, as well as commissioners, to use the standards as a benchmarking tool for good practice.

Conclusion

Our nurse-led health and wellbeing team have been instrumental in the development of national service standards for people with PMLD. They have implemented these standards within our organisation and promote best practice nationally.

The team has also worked to enable this group to have more control over their lives, with greater visibility and a voice through dedicated self/peer advocacy work. This shows it is possible for them to achieve a greater voice and role in society, and through the use of assistive technology, a greater level of control over their lives.

We believe that greater adoption of this approach can lead to more people with PMLD being active in their local communities, and in turn inspiring others.