People with Profound & Multiple Learning Disabilities

A Collaborative Approach to Meeting

Penny Lacey, Carol Oyvry

• Publisher: David Fulton Publishers
• Year: 2013
• ISBN:
  9781134097531
• Edition: 1
• Topic: Education
• Subtopic: Education General

First Published in 1999. This book is designed to be useful to practitioners working with children and adults with profound and multiple learning disabilities (PMLD). It was born out of a need for a practically-based text book for participants on a course devoted to the study of PMLD but became a project to provide discussion of interest to anyone wishing to reflect on their work in this field. It is hoped that the nineteen chapters in this book will provide a broad ranging resource for practitioners who work with children and/or adults with PMLD in education, health, social care and voluntary settings and for those studying on advanced courses.

Part One:
Personal

Chapter 1
Positive Health: A Collective Responsibility

Christine Hutchinson

Introduction

Is there anything worse than feeling ill, under the weather, or a little off colour? Yes... feeling all this and those around not recognising this and supporting you in the way you prefer, either by pampering, getting you what you need or leaving you alone.

This chapter is aimed at highlighting some of the many issues connected with the vast field of health and learning disabilities. The majority of the literature relates to the wider field of learning disabilities rather than directly to profound and multiple learning disabilities (PMLD). However it is still of relevance to this more specialist area of practice. The chapter is not intended to be a guide for diagnosis or treatment.

The term health, as used here, is taken to include the broader picture as denned by the World Health Organisation (1946) as 'a state of complete physical, mental and social well-being', not just the absence of disease or infirmity.

The underpinning principles within this area of practice, as with all aspects of working with those who have a learning disability, are that people with a learning disability are individual citizens with rights and personal needs. They are trying, and should be supported in their attempts, to live as ordinary a life as possible. It is important to recognise that those with learning disabilities or PMLD have exactly the same range of health needs as any person may have regardless of the level of learning disability.

Many people make regular checks or themselves. The information is compared with the people's own expectation of how their own bodies should be and should feel. It is when there is something out of the ordinary that further action is taken either to monitor the situation, treat the ailment themselves or seek medical attention. This action is often based on a number of aspects, such as how much pain it is causing, how much it is affecting daily functioning, how it makes one feel. Those things which cause the most problems or distress are usually those upon which medical attention is sought.

What will be explored within this chapter is how people with a profound learning disability, having made these assessments of themselves, communicate this to their carers in order to obtain the most satisfactory resolution to the problem and provide consent for any necessary procedures. The same principles which will be outlined also apply to their ability in coming to understand the diagnosis and treatment.

Some of the more common health issues are briefly described and the responsibility for meeting these needs explored. The main emphasis within this chapter is that services and carers need to be proactive in meeting the health needs of people with PMLD, they need to have a level of knowledge and there needs to be regular health surveillance and screening with actions being taken as early as possible.

Policies

Due to concern about the state of health of the British population, efforts have been made on a national basis for a number of years now to re-educate society and promote positive health practices. The Department of Health (DoH) launched its plan to address some of the priority needs through The Health of the Nation (DoH 1992). This document sought to approach what were seen as the five main areas of health which posed a significant problem within society:

• coronary heart disease and stroke
• cancer
• mental illness
• accidents
• HIV/AIDS and sexual health.

These key areas are those on which the Department of Health felt services should 'work together', the focus being on the promotion of good health and prevention of disease (DoH 1992).

Their strategy for people with learning disabilities was not published for a further three years with its aim to 'ensure that those with a learning disability are included in the action taken for the whole population' (DoH 1995 p.4). This document sought to provide a clear proactive agenda and emphasise that the needs and experiences of those with a learning disability are the same as those of the rest of the population (Holmes and Parrish 1996).

What the Department of Health's 1992 document assumes, is that the basic health care needs of the population are being met. The need to be free of pain and to have all health issues addressed is one which is extended to everyone. However, what has been clearly overlooked is the fact that those with learning disabilities, especially those with PMLD, and some other groups of individuals, do not have even these basic needs met.

Recognising the problem

There has been a great deal of research into the area of health needs of those with learning disabilities over the last decade; studies highlighting the unmet needs of hospital and community populations. Cole (1986), in his study of the needs of 53 individuals, found that 35 needed medical attention, 4 as a matter of urgency. Wilson and Haire (1990) found that of the 65 people they examined only 8 did not have an appreciable problem. Essex (1991) found that over one third of those in his study had a previously undiagnosed hearing or vision problem. Ganesh et al. (1994), who have provided the only recent study of health needs of those with a profound learning disability, found that 93.8% were underweight, 15.6% were severely underweight, all were at a high risk of pressure sores, 68.4% had epilepsy and 21% had a high level of health care need. Meehan et al. (1995) provided findings where 92% of those examined in their study had a previously undetected but treatable condition.

The most recent study is that of Turner and Moss (1996), funded by the Department of Health. They use the Health of the Nation key areas and compare information about these with the information available on the mortality and morbidity of people with learning disabilities. They found that cardiovascular health is a major concern to all those with learning disabilities, including PMLD; however, those with profound learning disabilities are at less risk of cancer than those with mild, moderate or severe learning disability. The prevalence of mental illness is at least as high as in the general population. The most common cause of death is respiratory disease with infections continuing to play a disproportionate role in the deaths of those with learning disabilities. There were no specific findings related to people with learning disabilities with respect to accidents or sexual health. They also provided information which supported the findings of other studies regarding unmet needs in the areas of vision and hearing.

From all of this research it is clear that the needs of those with learning disabilities are seriously overlooked. It highlights how important it is for carers to listen to people with PMLD and watch for changes in their behaviour. This is the only way they have of telling others that something is wrong. An additional strategy would be regular health checks, and this will be explored in the next section. There needs to be some action taken as a matter of urgency to correct the service deficits in detecting and treating illness. So why should we give any great emphasis to the Health of the Nation document?

Health surveillance

The Health of the Nation document provides a starting point. If it is ignored then the needs of people with learning disabilities will always be lagging behind in terms of national action. What is needed is additional resources to reduce the gap. One very useful way of starting to address this is through health surveillance and screening, the use of a structure which regularly checks the status of a person's health. Some children receive this through their school medical, school nurse services and health visitor interventions. Quite often it is when people move into adult services, where everything is in its own department and requires a separate referral, that areas of need become neglected.

The study conducted by Wilson and Haire (1990) found that the rate of GP consultations of people with learning disabilities was at a reduced rate (an average of 2.7 visits per year) compared with figures for the general population (3 per year for men and 5 per year for women) published in 1985 by the General Household Survey. This is further supported by Holmes and Parrish (1996) who state that 'people with learning disabilities are known to have higher rates of illness, yet access services less frequently than the general population' (p. 1184).

Why is it that people with learning disabilities and PMLD do not attend their GP as often? More concerning is why do those who do attend GP surgeries regularly, and do receive checks still have health needs which are not addressed? One reason may be the belief that 'it's all part of their learning disability'. Many signs which carers observe which could be an indicator of ill health, such as changes in mood, behaviour or appetite, are frequently dismissed as being part of unusual or inconsistent behaviour which is frequent in someone with a label of learning disability and particularly those with PMLD. It is in these cases that evidence needs to be provided to confirm that the aspects of the person's behaviour which are being presented are not the norm for that person, that there are changes and are therefore an indicator of something.

Many colleagues and peers believe that they are meeting the health needs or those they serve, and may feel that much of the evidence in these studies is not true of their own district, but they may not have considered what percentage of the local population of those with a learning disability are in fact offered a service. The studies outlined above were conducted with people who are supported, mainly in day centres but also in hospitals and specialist support groups, and yet there is a high level of health need identified. Clearly this support does not always guarantee that need will be met. Some professionals and carers are haphazard and reactive, awaiting observable signs of illness or distress before taking action. Leifer (1996) suggests that people with learning disabilities are less likely to complain until something is seriously wrong. How long then will those with PMLD have been suffering before it comes to the attention of those supporting them? This causes some concern if the matter is then left untreated for some time.

Holmes and Parrish (1996) feel that there are additional health needs for those with learning disabilities to those outlined in the Health of the Nation document pertaining to the general population. Some of these are detailed in the Strategy for People with Learning Disabilities (DoH 1995). They suggest that these should be highlighted and addressed through activities of health promotion and surveillance. Health promotion and surveillance are essentially proactive, especially if repeated in a systematic way on a regular basis (Jeffery and Higgs 1995). Accurate recordings would show the slightest deviation from previous surveillance findings, or patterns may be highlighted. In order for it to be most effective it would be best carried out on a regular basis by a carer who has a great deal of contact with the person, someone who knows him or her well, can communicate best with him or her and can recognise changes from the norm for the individual. It would be completed with a nurse or medic who would be able to interpret the recordings to highlight any issues which would require further investigation. Not only would some of the information be likely to dismiss the 'it's all part of the learning disability' syndrome but it may also detect early signs of abuse so that the most appropriate action can be taken. For this type of regular surveillance to be successful, carers must be vigilant and their observations discussed with others who support the person concerned.

There is evidence to suggest that people with PMLD may be denied access to regular screening services available to the general population. A colleague recently told me of her experiences of supporting a woman she works with at an appointment with the GP. This woman has profound learning disabilities and some physical disabilities. She had been suffering from some discomfort in her vaginal area and urine testing had not shown anything significant in terms of urine infections. My colleague was asking for a cervical smear to be considered. The woman was 29 years old and had never had one done so not only was it seen to be of benefit in checking there was nothing wrong, it was also her right to have the screening which is offered to all women in this country. The GP refused on the basis that the woman was not sexually active. How many other people would be asked if they were sexually active before the GP agreed to a smear? MacRae (1997) in her study of 24 women with learning disabilities found that only 10 had ever had this procedure completed. This is just one example which shows the clear discrimination which people with learning disabilities face. They need support from their carers to advocate for them and challenge the system and professionals within that system, not only for themselves but for all those with learning disabilities.

Communicating the symptoms

One of the main challenges in supporting people with profound learning disabilities is in establishing an effective and reliable communication system. It is impossible to overemphasise just how important this area is, especially when there may be additional barriers to communicating with those with profound disabilities. At times getting someone to communicate what they would like to drink can be a major hurdle, taking a considerable amount of effort from both parties to achieve. The communication of symptoms of illness will take even more effort and time. If a person's communication lands on 'deaf ears' then that channel of communication will close down.

Often we rely on the signs of illness or discomfort, changes in a person's behaviour, mood or general demeanour. This nonverbal communication is vitally important and it is imperative that it is interpreted as accurately as possible. Where possible, the interpretation should be relayed back to the person for confirmation, and action should then be taken based on that interpretation. The same principles apply when giving information to the person regarding consultation with the doctor or nurse, or about any investigations, treatment or other information relating to the issue. It is only when this is achieved, with the clarification of understanding, that consent can be better informed.

Detailed and accurate written communication and recording is needed, with careful and sensitive sharing of this with other people involved in supporting the person. Frequently signs of ill health appear in a progressive manner, or in clusters, and it is only when the whole picture is presented that a diagnosis can be made. For example, one may start with a headache, begin to feel hot or cold, move on to feeling as if there is swelling in the head and around the eyes, then feel a tickle in the throat, and within the space of one or two days one has a cold or 'flu. This build up would not be noticeable to anyone other than the person suffering, until they started coughing or wiping their nose frequently. Systematic records can help to remind people of different things that have been noticed and this is particularly important where there are a number of carers, any one of whom may be supporting the client when they go to see their GP. It may even be useful to have a separate sheet within a person's notes or a diary where such information can be easily accessed. Two published recording packages have been designed specifically for use with people who have a learning disability (Kitt et al. 1997; Matthews 1996). These records, as with others, should be factual and nonjudgmental. Recording opinions on how someone's mood appears can be useful, but it is important to state that it is an opinion and to try to offer some justification for the comment in terms of the observations upon which that conclusion is based.

Confidentiality is clearly an issue and, where possible, the person's permission should be sought before any information is shared. However, inter-agency working is essential in meeting the needs of those people we support and the sharing of confidential information is a necessary part of that collaboration. A balance has to be struck between breaching a person's privacy and providing essential information to others for them to be able to carry out their job or task. There are no easy, step by step rules about this. Personal and professional judgement is essential.

Whose needs?

Doctors' time during appointments is often precious to them and because of this pressure a consultation can seem very rushed. As a result it is often the carer's or professional's views and information which is acted upon rather than that of the person concerned. In fact, there can be times when the person is neither spoken to nor listened to. In these situations one often wonders whose needs are really being addressed. One woman who the author visited, often woke during the night and would...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• Contributors Profile
• Introduction
• Part One: Personal
• Part Two: Social
• Part There: Learning
• Part Four: Community
• References
• Index