Garvey, F. (2008) Setting up a learning disability acute liaison team. This is an extended version of the article published in Nursing Times; 104: 28, 30-31.
This article describes the setting up and implementation of a learning disability acute liaison team set up to improve the care provided for people with learning disabilities across general hospitals in Hertfordshire. The article outlines the issues surrounding care for adults with learning disabilities and describes how the new role of health facilitation nurse was implemented.
Frank Garvey, MSc, BA, Cert Health Ed, Cert Ed, RNMH, RNT, RGN, is strategic liaison nurse, Hertfordshire Partnership NHS Foundation Trust.
The white paper Valuing People (Department of Health, 2001) was published to help people with learning disabilities to live normal lives in the community. It set out the government’s vision for people with learning disabilities based on the key principles of rights, inclusion, choice and independence. In line with human rights legislation, the NHS is required, as a public body, to promote disability equality as outlined in the disability equality duty (Office for Disability Issues, 2006). The policy exists to give disabled people real choice and control over the services they receive. The challenge is translating policy into practice.
People with learning disabilities have not received fair and equitable mainstream healthcare (Disability Rights Commission, 2006; DH, 2001). Mencap’s (2007) report Death by Indifference built on a previous document Treat Me Right (Mencap, 2004), with both highlighting inequitable mainstream healthcare for people with learning disabilities. The more recent report focuses on general hospital care and suggests that widespread ignorance within these hospitals about the needs of people with learning disabilities has resulted in institutional discrimination. Six accounts are presented of allegedly ‘unnecessary’ deaths resulting from discriminatory practices. As a consequence of this high-profile report, the DH commissioned Sir Jonathan Michael to lead an independent inquiry examining acute healthcare provision for people with learning disabilities. The outcome of this inquiry is due to be published in summer 2008.
In response to mounting evidence of inadequate acute healthcare for adults with learning disabilities, the learning disability partnership board and healthcare commissioners in the county requested Hertfordshire Partnership NHS Foundation Trust to examine ways of supporting equitable healthcare for this group. Consequently, in October 2007 a small group of learning disability nurses – the acute liaison team – was charged with the task of taking this forward, to improve acute healthcare provision for adults with learning disabilities.
Learning disability services
Local services for this group are overseen by a learning disability partnership board, a coalition of people with interests and responsibilities associated with the delivery of support to adults with a learning disability. It includes service users, carers, representatives from voluntary and independent provider organisations, health and social care providers and commissioners. The board has responsibility for developing the local strategy for learning disability health and social services to reflect local need and align with national policy.
Hertfordshire Partnership NHS Foundation Trust is a specialist trust that supports people with learning disabilities and mental health needs. Within the county, learning disability statutory services are provided through seven community learning disability teams made up of community learning disability nurses and social workers. A range of specialist health services within the trust also serve people with complex needs relating to emotional, communication or mental health needs. These include assessment and treatment facilities that employ learning disability nurses, psychological therapies, communication therapy and psychiatry.
Developing the acute liaison team
The accounts of poor care provided for some people with learning disabilities have tended to overshadow examples of excellent care found in all general hospitals in the UK. The last five years have seen an increase in the emergence of specialist learning disability liaison nurses working in general hospitals. The focus of their role is as ‘health facilitator’ – engaging in partnership working to support the delivery of informed, equitable, efficient and effective healthcare to adults with learning disabilities.
In 2004, the trust created an innovative learning disability nursing post – the strategic liaison nurse to set up strategies to improve mainstream healthcare for adults with learning disabilities in Hertfordshire. The post covered all seven general hospitals across the county and had the support of all directors of nursing. The post-holder was a community learning disability nurse whose background also included general nursing and nurse education.
Before taking up the position, the strategic liaison nurse undertook a return-to-practice course to refresh their adult nursing competencies and become reacquainted with general hospital cultures and practices. The practical component of the course was spread out over six months, and included working as a staff nurse in a local A&E department.
As a result of the ever-increasing demand for liaison nurse input from both mainstream and specialist services, funding was secured in summer 2007 for two additional liaison nurses termed ‘health facilitation nurses’ working with the strategic liaison nurse. Together the three nurses form the acute liaison team.
The lobbying support of the hospitals, community learning disability teams, and carer and self-advocacy groups across the county were invaluable. The importance of accurate recording of referrals and activity cannot be overstated and has ensured that objective monitoring information was available to the commissioners when considering the business case for creating the team. Fig 1, Fig 2 and Fig 3 show some of the referral statistics collected over the six months to April 2008.
In establishing the case for a liaison service within acute care, it was important to gain support from the people who influence strategy and working practice within that arena - directors of nursing, consultants, lead nurses, modern matrons and practice development nurses, patient and public involvement leads and patient advocacy liaison service leads. All were essential in spreading the word to clinical areas about the acute liaison team and promoting the health facilitation nurses to hospital nurses and doctors as legitimate partners in healthcare.
The team’s role
The team’s overall aim is to support effective and efficient episodes of acute care for adults with a learning disability and build on the foundation of original work developed by the strategic liaison nurse. The role focuses not only on working directly with clinicians and patients, supporting care delivery and providing advice, but also on raising the profile of the support available to adults through community teams and specialist services for this group.
From an organisational perspective, the team supports learning disability protocol development and is involved in a range of hospital forums, constantly raising the team’s profile. Partnership working with the practice development nurses, modern matrons and discharge planning team provides opportunities to deliver basic formal and ad hoc education to clinicians – mainly covering communication, behaviour and consent to treatment. This also embraces the imperative of engaging service users and their accompanying carer as partners in care
Health facilitation nurse skills
These nurses’ skills are essentially the same as those of experienced senior learning disability nurses with community nursing experience:
Innovative problem-solving skills;
Knowledge of specialist services.
The nurses, who have specific interest in physical healthcare, are highly motivated, confident practitioners who can work autonomously developing their own support networks in general hospitals. Their remit has been specific, focused and resourced.
The future clinical development of the health facilitation nurses will include being educated as advanced nurse practitioners. They are also learning about the new business culture associated with the changing health economy – recognising market forces and the power of lobbying and facilitating community empowerment.
The health facilitation nurses work 8.30am–4.30pm Monday–Friday. Inpatient admission to a general hospital is normally through A&E, outpatient departments or as planned admissions.
When a person with a learning disability is to be admitted, the clinical areas telephone a single centralised number and the information is relayed to a health facilitation nurse. This practitioner can then liaise with the ward area and determine what support, advice and education may be required. Clear communication with the patient, clinical staff, home carers (where appropriate) and early involvement with the discharge planning team are vital to ensure an efficient and effective hospital stay and expedient, informed discharge. The health facilitation nurse can also appropriately engage learning disability health and social services, to provide the right support at the right time to complement acute care input.
Paul is a young man with mild learning disabilities whose ingrowing toenails were so severe that he could hardly climb a flight of stairs. While he was desperate to have this problem dealt with, he was terrified of hospitals. Over a year, there had been five failed attempts at four different hospitals to remove Paul’s toenails. Through the involvement of the health facilitation nurse and the development of a bespoke care plan, Paul successfully had both ingrown toenails removed. Since the operation Paul has regained his fitness and passion for playing sport. He and his mother regularly speak at conferences about how the facilitation nurse helped to change his life.
Where a planned intervention is to occur, the health facilitation nurse is able to draw together the relevant people to produce a workable care plan, designed to minimise fear and risk and promote choice and inclusion (see case study).
For instance, in a planned surgical intervention where there may be significant risk of aggression, the health facilitation nurse will work with hospital doctors and nurses to support in-depth assessments at the person’s home, gleaning detailed psychosocial information in greater depth than is usual within the general hospital environment.
This is very important for some people with an autistic spectrum disorder, who may have a range of personal routines and rituals which, if broken, can cause immense anguish. The new environment of a hospital – or indeed the journey to the hospital – can present immeasurable difficulty.
In this instance, the health facilitation nurse would work with the patient, home carers, GP, community team, district nurses and colleagues in the general hospital to produce a precise and detailed care plan. Their work would include the journey of care from the person’s home to their return home post-discharge. The plan would include contingencies and embrace continuing work with the community team and specialist learning disability health services on discharge.
A key part of the work has been developing protocols for people with learning disabilities and their carers, which outline agreed approaches for providing care to adults in this group. Protocols have been produced to cover A&E and outpatient departments across both Hertfordshire’s hospital trusts, while others are being developed to cover inpatient care.
The general approach outlined within the protocols is that, where possible, people with learning disabilities should be fast-tracked through hospital departments in a flexible manner. To that end, the following issues are emphasised:
Involvement of carers as potential experts in the care planning process;
Use of clear and precise communication (using words, gestures and drawings);
Extra time may be required;
Refer to the individual’s health action plan (this includes health-related information, communication advice and risk assessments);
Availability of the acute liaison team.
Copies of the protocols have been distributed throughout the learning disability community to raise awareness of the hospital service that has been agreed. The protocols are also being developed in accessible, easy-to-read formats. This community empowerment also provides a means of promoting the acute liaison team’s role. Posters advertising the team’s role with contact details are on display in waiting areas in A&E departments across the county. Promotional leaflets have been distributed to all clinical areas and throughout the learning disability community networks.
The team provides education to healthcare professionals on clinical areas in relation to individual patients and through planned educational awareness sessions. Focus groups were run across the county for hospital staff, carers and people with learning disability – that is, the stakeholders. The aim of the groups was to collect views on how existing hospital services were perceived and how they might be improved. The collective views were then analysed for themes which were used to form the basis of the educational sessions.
A film, Through Barry’s Eyes, was developed, using the feedback gained from the focus groups, and is referred to throughout the session. The script represents the thoughts and fears of a man with severe learning disabilities as he is brought into hospital following an epileptic seizure. Elements of the care provided represent poor practice, and the film serves as a discussion vehicle covering:
What a learning disability is;
Behaviours that challenge;
Consent to treatment;
Networks of support – including the role of the community learning disability nurse and acute liaison team.
A group of carers and people with learning disabilities were recruited to help provide education using their experiences of acute healthcare and express their wishes about how they would like to be treated in hospital. The film received positive reviews and was distributed throughout the UK for use in educating both nursing students and qualified nurses. The quality of the work and commitment of those involved was acknowledged with the prestigious West Hertfordshire Hospitals NHS Trust chief executive’s award for partnership working.
The educational sessions are aimed at interprofessional groups and are incorporated into existing hospital training sessions. The integration of learning disability awareness sessions into these educational days was secured through highlighting the transferability of the issues raised to other vulnerable groups and indeed patients in general. The sessions were advertised as covering information on the Mental Capacity Act (2005), capacity to consent, dignity in care and vulnerable adults – all highly topical and relevant to the care of all patients. The audiences to date have included doctors, nurses, managers, chaplains and even a mortician.
Views of carers and service users about their hospital experiences are obtained through an easy-read ‘My Hospital Stay’ evaluation booklet. This is offered by nursing staff to patients/carers on admission to hospital. The feedback is compiled into quarterly reports, which are fed into the dignity and care forums run within the two hospital trusts.
In partnership with commissioners, a large-scale audit has been devised and circulated to service users and carers throughout Hertfordshire. The audit questions were based on the main themes highlighted in Death by Indifference (Mencap, 2007) and the findings will be presented to the trust executive boards and the joint commissioning board this summer.
Black and minority ethnic groups
The extra difficulties for people with learning disabilities who come from BME communities have been nationally acknowledged and referred to as double discrimination. In partnership with stakeholders from the South Asian community in Watford and the primary care trust, a series of health promotional days are to be held for service users of Pakistani origin and their carers. The aim is to engage with this under-represented population to improve awareness and uptake of specialist and general health and social services.
The need for the learning disability nurse as health facilitator is unquestionable. The future need appears even greater – supporting people with learning disabilities to navigate and be empowered within future health services will require considerable strategy and expert involvement from learning disability nurses. Changes in future health services include: the advent of GP commissioners; the changing configuration of primary and acute care; the introduction of polyclinics; and the extended role of the pharmacist.
The pivotal role of the learning disability nurse as health facilitator was highlighted recently in the Good Practice Guidelines for Learning Disability Nursing (DH, 2007). Promoting the learning disability nurse as health facilitator has been key to recent advances in Hertfordshire. The commissioners have sought the views of service users and their carers and have recognised and responded to the future pressures that will impact on healthcare for this group. As a result, the acute liaison team is set to expand further to include the employment of another learning disability nurse and a person with a learning disability.
Department of Health (2007) Good Practice in Learning Disability Nursing. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_081328
Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. www.archive.official-documents.co.uk
Disability Rights Commission (2006) Equal Treatment: Closing the Gap. Part 1 of the DRC’s formal investigation report. Disability Rights Commission
Mencap (2007) Death by Indifference. www.mencap.org.uk
Mencap (2004) Treat Me Right. www.mencap.org.uk
Office for Disability Issues (2006) Disability Equality: A Priority for All. www.officefordisability.gov.uk