Midlands network launches to support people with disabilities at the end of life

A Midlands-based network to encourage discussion around end of life care for people with learning disabilities launches next month. Founders Gemma Allen, Diversity and Inclusion Lead at The Mary Stevens Hospice, and Helen Needham, senior lecturer in Learning Disability Nursing at Birmingham City University, explain how care provision to this group needs to improve.

People with a learning disability are more likely to die at a younger age than the overall population, however despite the mortality rate, life expectancy for this group has increased. Therefore, age-related conditions such as dementia are more prevalent – people with learning disabilities are five times more likely to develop dementia than the overall population, and those with Downs Syndrome are more likely to develop dementia at a younger age. We know inequalities in end of life care exist for those living with dementia, therefore people with learning disabilities are doubly disadvantaged at the end of life.

The Confidential Inquiry into premature deaths of people with a learning disability (CIPOLD) reported that coordination in care at the end of life was limited, and improvements are required to support both the individual and the people important to them. It stated people with a learning disability were less likely to access palliative care services and opioid analgesia for symptom management. Yet they have the same needs at the end of life as everyone else, including potentially having additional needs such as complex physical and mental health, poor prognosis due to late or missed diagnosis from barriers accessing healthcare, and communication difficulties.

Palliative care staff have reported having little confidence caring for people with learning disabilities at the end of life. Contact local learning disability nursing teams and see what training provision is available, offer palliative care training and learn from one another. Engage with people with learning disabilities, care homes, community teams, self-advocacy groups and carers. See how you can work with, and enable one another, to provide person-centred care, tailored to individual needs and concerns.

Adult hospices may not be accessible or equipped to support people with learning disabilities. Likewise, people with learning disabilities need to feel confident their needs will be met. Hospices should identify barriers and consider the best way these can be removed. Ask yourselves,

• Are hospice services accessible?
• Do you have information that people can understand?
• How aware are you of the needs of people with learning disabilities?
• Who are the community learning disability team, how can you support one another?
• How can we support carers for people with learning disabilities?
• What are people with learning disabilities’ expectations of your hospice and the care they would like to receive?

There are challenges for hospices in the UK in the current economic climate. We need to provide care for more people and commissioners should ensure palliative care and bereavement support services for people with learning disabilities are included in funding and provision of care.

Recruitment to training for registered learning disability nurses has seen a decline since the introduction of university fees and the removal of the bursary. This has brought about a recognised national shortfall in the number of Learning Disability nurses, and it impacts on all areas of health for people, which affects co-morbidities, diagnosis and treatment, access to appropriate services and overall inclusion as other professionals often require extra training and support to work with people with Learning Disabilities.

Furthermore, with changes to funding streams within social and health care, the purse strings are pulled much tighter, and we see that services for people with learning disabilities are affected by this.

In addition historically people have been supported by learning disability teams, and there is a reluctance by the mainstream palliative care provision to take the lead. Collaborative working, skill sharing and keeping the person at the centre is imperative in ensuring people with learning disabilities are aware of, can access and benefit from all the available resources in making choices the same as everyone else.

Only 5 per cent of deaths occur in a hospice bed, therefore the ethos of hospice care needs to be available throughout community settings. This does not necessarily need to be ‘specialist’ palliative care but connecting people to the right services, support for carers, working with and creating strong, resilient communities to care and support at the end of life. Hospices can be the catalysts in this, the connectors and the change agents, creating positive relationships between people and with people, including those with a learning disability, to live well until they die.

Family carers may have decades of experience, caring for the person throughout each stage of life. They may require advice and information, signposting to local services, practical support and emotional support.

Learning disability staff may have limited experience caring for someone at the end of life; this can be a challenge for many assisted living facilities and care homes providing end of life care.

The Mary Stevens Hospice provided education and competency support for 24 learning disability care home staff in addition to a one-day workshop for a specialist day centre. In addition, we included events for people with learning disabilities and carers during Dying Matters week last year and this year, encouraging conversations and enabling people to plan and discover what matters to the individual at the end of life so that everyone is better prepared.

The Midlands Palliative and End of Life Care for People with Learning Disabilities Network wants to hear about the experiences and future expectations of people with learning disabilities, carers and practitioners. The network launches on May 22. For more information and to book a place visit Evenbrite. If you are unable to attend but wish to be part of the network contact Gemma Allen