The area of health access is becoming a major concern. This is due to a number of other factors, which include. The increased longevity for people with learning disabilities with the manifestation of different health concerns linked to age. The survival of children with multiple disabilities into adults with complex needs. The recognition of certain conditions linked to specific disabilities such as Alzheimer’s and Down’s syndrome. The progress of deinstitutionalisation is nearly complete and the remaining large institutions/hospitals are closing and the developments of services in the community are faced with challenges.
Some of these factors were previously identified within the document “Signpost for Success” DoH (1998) and are again mentioned partly in “Valuing People” DoH (2001). Also within the White Paper “Valuing People” is the recognition that people with learning disabilities having higher health needs than the general population (DoH 2001 p6). These health needs are as a result of increased incidence of epilepsy; cerebral palsy prevalence for both of these conditions is thought to be three times higher than the general population, Gates (2003), visual problems, hearing difficulties and increased dental needs.
It is recognised that people with learning disabilities do not always receive the standard of health care service expected by people who do not have learning disabilities (Gates 2003). In fact despite their higher health needs people with learning disabilities access primary health care less than the general population (Glasby 2003). It is essential that this inequality of care be addressed and unless this is done with the support of the specialist services, and community learning disability nurses in particular, the health-related needs of people with learning disabilities will continue to be overlooked (Styring 2003).
The White Paper “ Valuing People” states that “good health is an essential prerequisite for achieving independence, choice and inclusion”(DoH 2001 p23). This is recognised by Mitchell (2003) who believes that “People with learning disabilities cannot be socially included if they are in poor health. Health is the starting point to so many other opportunities”.
The author was fortunate enough to have been allocated a placement on an assessment and treatment unit and observed changes that were implemented there in accordance with “Valuing People”2001. This leads to a case study of a patient and how her health needs were assessed. Exploring into her past and current life experiences and the impact they had on her health and health choices. Susan (not her real name) (Nursing and Midwifery Council 2008) is a 45-year-old lady who has Down’s syndrome and presents with a moderate learning disability. Her verbal communication is good but she has a tendency to mumble when experiencing change in mood. She was brought up on a council housing estate where she lived with her parents who originated from a working class background. Unfortunately her mother pasted away a year ago and her father was unable to cope. Susan was moved into a small community home with other learning disabled people. Her social problems worsened whilst in her community setting she started to display challenging behaviours towards the support team and her fellow residents. This led to Susan being admitted on to the assessment and treatment unit where she has remained for the past 10 months. Throughout this time on the unit, Susan’s physical and mental state has slowly declined. It has been made apparent that there are worries about Susan’s withdrawal and lack of interest in her surroundings and social interaction with her peers as this is out of character. A review of her person-centred plan identified some health concerns specifically in relation to her low in mood; weight loss and current medication that could be a link to her ill health. It was established that a further more comprehensive health assessment was required to quickly identify any possible physical factors to Susan’s health. This was achieved by the use of “OK Health Check” (Matthew 2003) it is an assessment tool specially designed for the health needs of people with learning disabilities. It enables both qualified and unqualified carers to recognise these needs (Gates 2003). It is felt that there could be internal and external factors involved, due to the long hospitalisation of Susan, the loss of her mother and lack of personal contact from family and friends could all be contributing factors to Susan’s behaviour and health.
The result of Susan’s health check found that overall general health was good, but identified recent episodes of dental problems. Additionally, she had not attended her dental appointments for almost 15 years. It was found that Susan had a number of teeth that were badly decayed and in need of treatment. These finding indicated that Susan needed to be referred promptly to a dentist, dietician and speech and language therapist for further consultation. The findings did not rule out the need for Susan to also be referred to a bereavement councillor, as the loss of her mother was also a contributing factor in the change in health. During this time on the unit Susan has been monitored, supported and encouraged to contribute to her needs by attending numerous meeting with the multi-disciplinary team to try and determine the best way forward for Susan, incorporating her health needs and choices. In order to re-introduce her back into a community setting that will best meet her individual needs. Susan has clearly stated her need for long corridors for her to walk up and down. This request proposes a problem for the team due to a shortage of placements in the community.
If we look back at her case history, we can see triggers starting to emerge into why Susan’s health is compromised. Socio-economical factors of deprivation growing up on a council estate with her parents on a low income are possibilities for inequality to Susan’s health needs. For example unable to afford travel cost to attend dental appointments. Other barriers to Susan’s health needs as a child were poor attitudes and understanding shown by generic staff (including GP’s and other health professionals), communication difficulties, and low expectations with many individuals and their carers tolerating unacceptable standards of care, fear and anxiety, lack of understanding about the process of consultations, information not being provided in accessible format and lack of understanding and awareness of individuals/carers about their health needs. Some of these problems still exist today. Education plays a role and in Susan’s case may well of been another issue that was lacking when growing up. Education is important in promoting good health giving advice and information in order to promote awareness in adopting healthy lifestyles. Close (1998) suggested that patient education is increasingly being recognised as an important function in nursing practice whether they like it or not. Although much of the information offered to patients about health provision, relies on people having a good understanding of written English, and therefore inaccessible to people who communicate in other ways. Therefore letters inviting people to take up screening programmes may be left unopened and unread, while written advice about medication will be of little use if unaccompanied by other methods of communication. This issue would also cause problems for people from other ethnic backgrounds. Biennial Report commented “many professionals seemed to lack basic knowledge about different needs of ethnic minority communities and to have little real understanding of institutional racism and the effect of cultural differences on the nature of learning disabilities”. Mc Kenzie (1999) also pointed out that institutional racism, “goes to the very core of health practice”, and in the area of health he identified several consequences of institutional racism. “People from minority ethnic communities have poorer health, poorer access to services, and are treated differently”.
There also appears to be a problem in Susan’s mental health state, which has deteriorated since being admitted onto the unit probable cause hospitalisation and little contact made to family and friends, but also an underlying problem with the loss of her mother. A referral may be necessary to a therapist/councillor to try and establish if there are signs of depression and the best way to treat it.
Susan’s health needs are a challenge for the health and social care professionals. It is well recognised that over the last 15-20 years much has been introduced recorded and evaluated concerning the way forward for people like Susan with learning disabilities. This has been evaluated by some analysts stating there to be compelling evidence that process is scant (Russell 1999 as cited in Gates 2003). It is well known that change, both in attitude and in the system takes time, but will Valuing People (2001) encourage the shift towards improved services for learning disabled people any quicker or smoother?
The barriers that the nurse and other health professionals would need to overcome in order that the patient’s care would reflect the standards expected from Valuing people are Person Centred Planning (PCP) this is the way forward in partnership working with people and their families to achieve personal autonomy. As people with learning disability often have unmet health needs, another aim in caring for these people is to help the person have more control over their health (Gates 2002). Although in an health setting this as yet appears to be not fully understood or fully implemented and will require the full co-operation of all professionals within the team and beyond. There is a down side to this PCP concept and that is, it can be deemed as expensive and depends on the resources available within the trusts. This aspect was identified in the case study of Susan in finding her a community setting to meet her individual needs, as good-quality community care is both expensive and labour-intensive but also there appears to be a shortage of placements on offer. OK Health Checks where some clients may have these in place, an update may be necessary to ascertain the health situation of the patient.
One of the largest barriers appears to be communication between health care services, but also the level it is used for people with learning disability is often too high for them to understand. Gates (2003) highlights that GP’s often use jargon during consultations with patients and should the patient look bewildered by this the GP will adopt a patronising approach, thus exposing the patient’s fears in a compromising manner. The role of the nurse in this scenario would be of a advocate to the patient and an educational advisor to the GP informing them of the patients levels of understanding, fears and hopes for their own future.
Qualified carers in learning disabilities services need to be highly flexible so that they can respond to changing needs and opportunities (Seal 1998). The author argues that other professionals within the team have not been trained to deal with assessment of a patient with learning disability health needs and therefore would find it difficult to facilitate communication with other health professionals on the need of that patient.
The role of the nurse has been changing and developing for many years, gone are the days of basic care in an intuitional care setting. The holistic approach is necessary to assess all aspects of health and consider each patient as a whole person in order to find the best treatment.
In conclusion, the role of the nurse and health professionals is built on the developing equal partnerships with the people they work with, so that the health needs of people like Susan who have a learning disability, their families and carers can be met effectively, efficiently and in a resourceful manner. They need to practice in a sensitive and non- discriminatory manner to enable people to fulfil their needs and aspirations so that people with learning disabilities can be truly included within our society.
The author has learnt a great deal of knowledge not only from this assignment, but also being involved within a learning disabilities assessment and treatment unit. The skills and knowledge obtained from this experience can be put to use within a clinical setting. The author looks forward to seeing these changes being implemented with effective communication systems and processes for the patient, working in partnership with other members of the nursing and care team all of whom have received adequate training in both the social and health needs of a patient with LD. The author recognises the aim of the Government incentives for people with learning disabilities is to improve equal access to health and is only part of the process highlighted in Valuing People 2001 and recognises that the onus is on the health and social care professionals to liase with other sources in order for the patient to achieve choice, independence inclusion and rights as stated in Valuing People.
References
Close, T (1998) Promoting Healthy Lifestyles, Nursing Times, 18 (5), pp. 17-18
Department of Health (2001) “Valuing People”: A New Strategy for Learning Disability for the 21st Century, Cm 5086.TSO, London. pp.6-125
Gates, B (2003) Learning Disabilities: Towards Inclusion, 4th ed. London: Churchill Livingstone. pp.221-227
Glasby, J (2003) Hospital Discharge: Integrated Health, 2nd ed. Oxford: Blackwell Publishing. pp.135
Matthews, D (2003) The “OK” Health Check: Health Facilitation and Health Action Planning, 3rd ed. Preston: Fairfield Publication
Mitchell, C (2003) Themes and Perspectives, 2nd ed. Oxford: Butterworth-Heinemann
Mc Kenzie, K (1999) Something Borrowed from the Blues. British Medical Journal, 318 p616-617
Nursing & Midwifery Council, (2008) Code of Professional Conduct, Standards for Conduct, Performance and Ethics. London: NMC
Roger, A & Pilgrim (2001) Mental Health Policy in Britain, 2nd ed. Basingstoke: Palgrave.
Russell, S (1999) Avoiding Chaos in the Community In: Gates, B 4th eds. Learning Disabilities: Towards Inclusion. London: Churchill Livingstone. pp.176
Seal, R (1998) Communicating with People with Learning Disabilities. [Online]
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Styring, J (2003) Health Care Social Care 2020, London: Harper Collins
Wolfensberger, W (1972) The Principle of Normalisation in Human Services, Toronto: National Institute of Mental Retardation
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