Health Action Plans for People With Learning Disabilities
Summary
This article describes the design of a health action plan included in a care package for a person with learning disabilities. It provides working knowledge and guidance to students, nurses and service providers who are currently undertaking similar interventions. The rationale for developing the health action plan is explained and the intervention is detailed in relation to the person’s circumstances.
Keywords
Learning disabilities; Learning disabilities: community nursing
These keywords are based on the subject headings from the British Nursing Index. This article has been subject to double-blind review. For related articles and author guidelines visit our online archive at www.nursing-standard.co.uk and search using the keywords.
THE WHITE paper Valuing People (Department of Health (DH) 2001a) stated that each person with a learning disability would be offered a health facilitator by 2003. The role of the health facilitator is to support people with learning disabilities in getting the health care they need. It also stated that this client group should be registered with GPs who must identify all people with a learning disability who are registered with their practice and also that they should have a health action plan – a communication tool used by clients to highlight needs and choices – by 2005.
These appear to be important principles of service provision. However, it does not necessarily follow that they will result in better health care. Some authors have argued that Valuing People encourages and advocates a principle that will lead to people being labelled, albeit in confidential medical records (Gates 2003 ).
Background
There is a broad acknowledgement within learning disabilities services that the general health of this client group is poor (Matthews 2002) and that care in the community has not met their day- to-day healthcare needs. This could be attributed to poor communication, inability to use facilities appropriately and primary health care teams lacking adequate knowledge and experience in learning disabilities. Research has found that the health deficits of people with learning disabilities fall below targets set out in Our Healthier Nation (DH 1998a), which identified key areas of health for improvement (Turner and Moss 1996).
Good health care for people with a learning disability is a balance between achieving best possible health and reducing the barriers that ill health can impose. This balance involves the ability to assess and understand a person’s needs, while delivering care that is appropriate to their needs, and treating them as effectively as possible (Kerr 1998), all of which would be achieved in an individual’s health action plan.
Health action plans are not new. Fitton (1994) discussed the importance of individual plans and care books for people with a learning disability. She stressed that the care book is a valuable tool that could be used to empower people in communicating information about them and as a reminder, reference and guidance document for the person’s carers. The DH is showing increased recognition of and support for the health needs of people with learning disabilities (DH 2001a, 2001b, 2002). Carers and professionals must therefore take this opportunity to use the many new resources available to develop health action plans and improve healthcare standards for this client group. Failure to do so may mean that the current era will be viewed as a succession of wasted opportunities in years to come.
Health action plans and health facilitators
Health action plans are individualised and will vary from person to person. There is no set format but guidelines on application can be followed. A health action plan should detail the actions needed to maintain and improve the health of a person and any help needed to accomplish this (DH 2002). It is a tool that can be used to link people and the services and support they require to ensure good health. The functions and benefits of the plan are to identify health concerns and how to address them, while improving the involvement and co-ordination of services for the person. The health action plan acts as evidence that the person’s service provider is working within the boundaries outlined in the Care Standards Act 2000.
The report Signposts for Success (DH 1998b) stated that up to 30 per cent of people with learning disabilities have associated physical disabilities and little or no functional speech, although they may have other means of communication. This emphasises the importance of a well written health action plan.
The role of the health facilitator is important to the smooth running and appropriateness of a person’s health action plan. The first point of contact for identification of the healthcare needs of people with learning disabilities is their direct carers, not the primary healthcare team. The team can only respond to people’s needs after they have been brought to their attention by carers. Matthews (2003) suggested that carers are in the best position to recognise changes in behaviour and health. He believed that, with appropriate training, a person’s key worker, working in partnership with a specialist nurse in learning disabilities, would be the ideal health facilitator. The document Valuing People (DH 2001a) states that staff, relatives and carers who live and work with people with a learning disability on a day-to-day basis are in an ideal position to influence their health and have a responsibility to do so. Training and education of carers are essential. This will increase their awareness of, and attitudes towards, all aspects of health, which in turn will have a significant effect on the level of service uptake and ultimately people’s quality of life (Kerr 1998).
Health facilitators are best equipped to evaluate and update health action plans, as and when required. If the benchmarking process is adopted, particularly in relation to Essence of Care (DH 2001b), then everything can be adapted to learning disability nursing by using a person-centred approach, through which each person is evaluated according to his or her needs and circumstances. This would ensure that all policies were being used in conjunction with each other, and that the health facilitator – and in particular the person’s health action plan – were promoting the four key principles of choice, independence, rights and inclusion that underlie the white paper Valuing People (DH 2001a).
Development of a health action plan
The client involved in this intervention had profound disabilities and complex needs. For the purpose of this article, and in accordance with clause 5 of the Nursing and Midwifery Council’s Code of Professional Conduct (2002) on confidentiality, her name is Irene.
Irene was unable to give informed consent because of her disabilities. However, good working practice dictated that Irene’s named nurse and home manager sign a proxy consent form. This form acted as a safeguard to Irene and staff, and clearly stated why the intervention was being carried out and the benefits to be gained by Irene as a result. The form was subsequently completed and placed in Irene’s file.
Irene’s regular care team was dedicated and professional. The duty and level of care provided were of the highest standard and team members worked in a proactive way, ensuring that her needs were met. She had been enrolled for some time with a GP with whom she had a good relationship. There may not always be such a relationship between clients and GPs and GPs may not always deliver an appropriate standard of service to people with learning disabilities, mainly due to a lack of knowledge and understanding (Rodgers and Russ 2003).
The author’s trust was undergoing a period of transition, from the old system of life plans and reviews, towards a more person- centred approach. This included the client’s ‘My Plan’ – the trust’s version of Lifeplan – as well as health action plans, therefore ensuring concordance with the recommendations outlined in Valuing People (DH 2001a). However, because this was a time-consuming process the trust did not foresee the health action plan being available for at least 18 months. Authorisation was given for the author and Irene’s key worker, acting in the role of health facilitators, to work with Irene in assisting her to produce a health action plan that would promote better health. The trust also stated that the completed plan could be used as an in-house guidance document until the trust’s version of a health action plan was available.
Irene’s new ‘My Plan’ was in place for the beginning of the new year. A more person-centred approach was adopted compared with her old life plan and rights, choice, independence and inclusion were all promoted. It seemed logical that the starting point for producing her health action plan should be to include all issues which had been highlighted in the ‘OK Health Check’ assessment (Matthews and Hegarty 1997) – a tool used to assess the health of people with learning disabilities – which had been carried out as part of Irene’s ‘My Plan’. Health action plans need not be complicated. As the person involved will have a learning disability, simplicity is the best approach (DH 2002). The primary healthcare team who worked with Irene had given her relevant and up-to-date information regarding specific issues as part of her ‘My Plan’.
I\t was agreed that the health action plan should be split into three sections. Section one (Table 1) was compiled to act as a quick reference, ensuring that Irene’s healthcare needs were being met. Section two (Box 1) covered all outstanding issues related to the OK Health Check assessment. Section three (Table 2) was aimed at maintaining good health. A list of all Irene’s healthcare issues was compiled along with the guidance and input received from the primary healthcare team and the guidance pertaining to her ‘My Plan’. The author then correlated this information and extracted the relevant details relating to a specific healthcare need. This information was prioritised and condensed, and in turn formulated the health action plan for that specific healthcare need. This process was repeated for each health issue and the result was a completed health action plan. For example, Irene had epilepsy, thus all epilepsy guidance, medication information, input received from her neurologist, GP and trust specialist nurse in epilepsy were correlated, prioritised and condensed, forming an epilepsy health action plan.
TABLE 1
Health action plan: section 1
When analysing and evaluating Irene’s completed health action plan it was agreed that the benchmarks outlined in Essence of Care (DH 2001b) should be adopted. This would ensure that a thorough and adequate health action plan had been written, which met her healthcare needs while ensuring that nothing had been overlooked. The benchmarks include principles of self-care, personal and oral hygiene, safety, privacy and dignity, food and nutrition, continence and bladder and bowel care, record keeping and communication. For example, Irene had dysphagia and, by using the food and nutrition benchmark, it was possible to establish whether her healthcare needs were being met by ensuring that she was enjoying a healthy balanced diet, monitoring and recording her weight, and ensuring all recommendations and guidance received from her speech and language therapist were being adhered to. This was an important area because Irene had a history of medical problems that could have been related to carers not adhering to her dysphagia guidance when supporting her to eat and drink. When the checks were completed it was concluded that the food and nutrition section of her health action plan was relevant and met her healthcare needs. The process of evaluation was repeated for each section of the health action plan.
During a team meeting, Irene’s named nurse and carers had an opportunity to state their views on her health action plan. The feedback was positive and encouraging. Her team of carers recognised the benefits to be gained by Irene as a result of the plan. These included better health care, more continuity in care (particularly during times of short or unfamiliar staffing), more empowerment and a better means of communication. They also identified the underlying strengths of the new person-centred plan and health action plan documentation, realising that the benefits were more far reaching than day-to-day care, addressing health inequalities and discrimination and providing better service provision and accessibility.
The next step in the implementation process was to decide on a clear method of record keeping which would not confuse staff. We then updated Irene’s health action plan. The guidance document Action for Health (DH 2002) promotes the idea that people only need a health action plan during transition periods in their life. However, a long time may elapse before a person goes through a transition period and people’s views on what they consider a transition period may differ. Adopting this practice would have increased the risk of Irene’s healthcare needs not being met and issues being overlooked. As the trust was undergoing change in its working practices and policies, it seemed an ideal time to introduce her health action plan. It was agreed that reviewing and updating her health action plan would be the responsibility of her health facilitator, who was her key worker, under the supervision of her named nurse. The plan would be updated as and when Irene’s circumstances and needs changed, otherwise it would be undertaken yearly.
BOX 1
Health action plan: section 2
The final part of the implementation process was to publish two copies of the plan, one for Irene and one for staff records, which would act as guidance on a need to know basis, ensuring compliance with the Data Protection Act 1998 (DH 2000).
Staff at the trust were pleased with Irene’s health action plan. They said that it might provide direction for staff training and implementation techniques when their health action plans went live.
TABLE 2
Health action plan: section 3
TABLE 2
Health action plan: section 3
TABLE 2
Health action plan: section 3
Conclusion
The focus of this intervention was to help promote better health care for Irene. Healthcare practitioners have a responsibility to use all available resources to promote and achieve the best possible health care for people with learning disabilities. This can be achieved with minimal disruption to working practices and clients’ lives.
By adopting the most recent and up-to-date policies, practitioners will be able to identify the quality of the information required to achieve good health. Health action plans are an ideal way to promote empowerment among people with learning disabilities and health facilitators in providing support and assistance through the maintenance of health action plans.
When compiling health action plans it is vital that the four key principles which underlie Valuing People (DH 2001a) are evident. This helps to ensure that the plans work for clients and promote better health care
Howatson J (2005) Health action plans for people with learning disabilities. Nursing Standard. 19, 43, 51-57. Date of acceptance: December 8 2004.
References
Department of Health (1998a) Our Healthier Nation: A Contract for Health. The Stationery Office, London.
Department of Health (1998b) Signposts for Success in Commissioning and Providing Health Services for People with Learning Disabilities. The Stationery Office, London.
Department of Health (2000) Data Protection Act 1998: Guidance for Social Services. The Stationery Office, London.
Department of Health (2001a) Valuing People: A New Strategy for Learning Disability for the 21st Century. The Stationery Office, London.
Department of Health (2001b) The Essence of Care: Patient- focused Benchmarking for Health Care Practitioners. The Stationery Office, London.
Department of Health (2002) Action for Health: Health Action Plans and Health Facilitation: Good Practice on Implementation for Learning Disability Partnership Boards. The Stationery Office, London.
Fitton P (1994) Listen To Me: Communicating the Needs of People with Profound Intellectual and Multiple Disabilities. Jessica Kingsley Publishers, London.
Gates B (2003) Planning for health: a contrary reflection on health action plans and health facilitators. Journal of Learning Disabilities. 7, 1, 5-7.
Kerr M (Ed) (1998) Innovations in Health Care for People with Intellectual Disabilities. Lisieux Hall Publications, Lancashire.
Matthews D (2002) Learning disabilities: the need for better health care. Nursing Standard. 16, 39, 40-41.
Matthews D (2003) Action for health. Learning Disability Practice. 6, 5, 16-19.
Matthews D, Hegarty J (1997) ‘OK’ Health Check: health assessment checklist for people with learning disabilities. British Journal of Learning Disabilities. 25, 4, 138-143.
Nursing and Midwifery Council (2002) Code of Professional Conduct. NMC, London.
Rodgers J, Russ L (2003) Better health for people with learning disabilities. Primary Health Care. 13, 5, 35-37.
Turner S, Moss S (1996) The health needs of adults with learning disabilities and the Health of the Nation strategy. Journal of Intellectual Disability Research. 40, 5, 438-450.
Author
John Howatson is deputy team leader, residential, West Kent NHS and Social Care Trust.
Copyright RCN Publishing Company Ltd. Jul 6-Jul 12, 2005