People with learning disabilities are now living longer and may develop diseases such as cancer. A fast track referral pathway ensures their needs are met
Jane Whitington, BSc, DipN, RNLD, is community learning disability nurse, Havering Community Learning Disability Team, Hornchurch, Essex, Outer North East London Community Services; Peng Ma, DipN, RNLD, is healthcare coordinator, Brentwood Community Learning Disability Team, Brentwood, Essex, South Essex Partnership University Foundation Trust.
People with learning disabilities often experience inequalities in accessing general health services. This group, their families and carers need access to effective palliative care when facing a life limiting illness.
This article describes the development and implementation of a fast track referral pathway for people with learning disabilities at St Francis Hospice in Essex. Our aim is to share this pathway so that others can replicate the collaborative working to improve access to palliative care services for this group.
Keywords Learning disabilities, Palliative care, Referral pathway
- This article has been double-blind peer reviewed
- Sharing knowledge and expertise between learning disability and palliative care professionals has resulted in collaborative working.
- We recommend all hospices start to engage and build relationships with their local community learning disability teams to develop pathways together.
- Communication is vital - not only with patients but also between services.
- More resources are needed, especially specialist bereavement counsellors for people with learning disabilities.
People with learning disabilities often face inequalities and barriers in accessing general health services, and this can also be true when they are dying (Todd, 2005). The healthcare needs of this group have been well documented (Michael, 2008; Mencap, 2007). However, there has been little research and evaluation of their palliative care needs (Tuffrey-Wijne, 2003).
People with learning disabilities may depend on relatives or carers to observe for any changes or report symptoms to GPs, and this can prove difficult because of lack of awareness. “Diagnostic overshadowing” is often an issue for this group, as there is a tendency for healthcare professionals to blame ill health on learning disability rather than exploring the physical problem (Disability Rights Commission, 2006).
Once people with learning disabilities are diagnosed with a life limiting illness, they often do not have access to specialist palliative care services and support can be uncoordinated, sometimes resulting in delays in appropriate treatment.
The Department of Health’s (2008) end of life care strategy may make a difference to the way this group are treated, as it stresses that high quality care should be accessible for all, irrespective of whether they have a disability. The Mental Capacity Act 2005 also means that people with learning disabilities are always at the centre of the decision making process and its principles have to be considered throughout the end of life care pathway.
Starting work on the pathway
In 2007 staff from St Francis Hospice attended a Help the Hospices conference on widening access to palliative and supportive care for marginalised groups. They decided to focus on how to make improvements for people with learning disabilities.
An invitation was sent to local professionals working in both palliative care and learning disability services to meet to plan the way forward. Regular meetings created a network and a working group was formed, consisting of representatives from the three local community learning disability teams (CLDTs), Macmillan nurses, hospice nurses, GPs and medical consultants. It was chaired by the medical consultant and the director of patient services from the hospice.
The group identified a need to create a fast track referral pathway for people with learning disabilities and a life limiting illness. This would mean early face to face contact and the opportunity to build positive relationships, which may in turn prevent the need for crisis management.
The referral pathway
The hospice referral form has been adapted to highlight whether patients have a learning disability. A specific code featuring their vulnerability is entered onto the electronic patient record system. Those with a learning disability are highlighted at the hospice’s referral meeting.
Within one day of receiving the referral, the triage team makes telephone contact to obtain key information on the patient, which is gathered from someone who knows them well, such as a key worker, relative or community learning disability nurse.
The pathway has prompts for the triage nurse to request health information in any of the formats the person may use, such as personal health records, health passports or hospital communication books.
There is also a prompt to check whether the person is known to the local CLDT and to refer and liaise with them if necessary.
Patients with learning disabilities are prioritised for an early home visit, which is undertaken with someone who knows them well. The aim is to understand as much about the patient as possible, allowing for a person centred approach.
Multiprofessional team working
If the referral is appropriate, the case is presented at the multidisciplinary team meeting, with an open invitation for key workers to attend if they wish to. Specific needs are discussed to ensure an understanding of the patient and their support network.
The hospice clinical nurse specialists work jointly with someone who knows the patient well to plan care and identify any specific needs for palliative care staff. Risk assessments are essential to care planning.
Our clinical experience and discussions with clients and carers show that many people with learning disabilities prefer to receive care at home rather than as hospice inpatients, and they are also more comfortable in their own surroundings. This means staff need to consider the care setting carefully.
Future bereavement needs are also considered, including pre bereavement work and provision of specific learning disability literature for family and friends, some of whom may also have learning disabilities.
The networking meetings also highlighted that the hospice needed more information on learning disabilities. Resource packs were developed for each clinical area, with relevant information such as contact details for the CLDTs and useful tips on caring for people with learning disabilities.
Champions in learning disability
Another idea was to identify champions, that is, specialist palliative care staff with an interest in learning disabilities. Two people were identified to act as a link to the CLDTs, which has worked well. The champions act as a point of contact to discuss individual cases and provide support, and also promote the joint work to hospice staff.
The hospice held a conference focusing on learning disability and end of life care in November 2008. A range of speakers who have published widely on the subject gave presentations, including Irene Tuffrey-Wijne, the author of the Research Report[link]. Three carers shared stories about their relatives who had learning disabilities and life limiting illnesses, which highlighted both positive and negative experiences to learn from. Service development needs and a plan for the way forward were drawn together and the pathway was officially launched.
As a result of the referral pathway, the hospice now has a way of capturing information about the number of people with learning disabilities receiving end of life care. This information has been audited and in the last year, seven people with learning disabilities and advanced illness have been seen at the hospice. The audit has demonstrated that staff making referrals have welcomed the early initial contact and an opportunity to discuss problems and plan together.
However, the work has highlighted a need for awareness training for both primary and acute care staff on the health needs of people with learning disabilities, which should also include the complex addition palliative care needs.
We are promoting the pathway through the work of the National Network for Palliative Care of People with Learning Disabilities. The medical director and director of patient services from the hospice had a poster displayed at the 11th Congress of the European Association for Palliative Care in Vienna in May 2009 on the project.
Collaborative working is essential to ensure people with learning disabilities receive good quality palliative care. By sharing knowledge and expertise between learning disability and palliative care staff, we have realised that neither group has all the answers. Learning disability nurses have shared the latest documentation and accessible health information and palliative care staff have shared documentation about end of life tools and protocols. The group has learnt about each others’ roles and responsibilities.
This work has been proactive and refreshing as the local hospice took the initiative and approached learning disability services to work with them rather than the other way round, which is so often the case. We believe this work and the pathway could be transferred to other hospices and CLDTs throughout the country to improve access more widely.
The referral pathway will hopefully ensure that people with learning disabilities have a coordinated and seamless journey in the last stages of their life.
- People with learning disabilities are living longer and therefore may develop life limiting illnesses such as cancer or dementia.
- This group do not take up opportunities to attend regular screening, which may be because of previous poor experiences with healthcare, as well as invites and information not being in an accessible format.
- They often present with symptoms of a life limiting illness late in the disease process. Many people with learning disabilities have a fear of hospitals or may not understand any physical changes (Tuffrey-Wijne and Davies, 2006).
- For further information on this project, please contact Jane Whitington at email@example.com
The authors would like to thank Dr Corrina Midgley and Jane Sutherland from St Francis Hospice who led this initiative, and also Janet Kirby and Laura Dines, the two learning disability champions from the hospice who have been an active part of the working group.
Department of Health (2008) End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: DH.
Disability Rights Commission (2006) Equal Treatment: Closing the Gap - a Formal Investigation into Physical Health Inequalities Experiencedby People with Learning Disabilities and/or Mental Health Problems. London: DRC.
Mencap (2007) Death by Indifference. London: Mencap. http://tinyurl.com/death-indifferent
Michael J (2008) Healthcare for All: Independent Inquiry into Access to Healthcarefor People with Learning Disabilities. London; Aldrick Press.
Todd S (2005) Surprised endings: the dying of people with learning disabilities in residential services. International Journal of Palliative Nursing; 11: 2, 80-82.
Tuffrey-Wijne I (2003) The palliative care needs of people with intellectual disabilities: a literature review. Palliative Medicine; 17: 55, 55-62.
Tuffrey-Wijne I, Davies J (2006) This is my story: I’ve got cancer. ‘The Veronica Project’: an ethnographic study of experiences of people with learning disabilities who have cancer. British Journal of Learning Disabilities; 35: 7-11.