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Keywords:

  • Care management;
  • family;
  • health;
  • learning (intellectual) disabilities;
  • staff training

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References

Accessible summary

  • This paper looks at the views of paid- and family-carers about discussing health matters with people with learning disabilities.
  • The author found that the roles of paid- and family-carers in monitoring health were not clearly defined.
  • Explaining health problems and different medical tests to people with learning disabilities proved difficult.
  • Nevertheless, carers possessed good skills in helping people with learning disabilities understand more about their health.

Summary

Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. Thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid-carers claiming that health was outwith their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid-and family-carers and with the integration of health and social services.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References

Changes in the living circumstances and service provision over the last two decades for people with learning disabilities have had an impact on service delivery (Emerson 2004; Oakes 2007). The NHS and Community Care Act 1990 saw many people with learning disabilities moving out of institutions into the community, thus changing how people with learning disabilities lived their lives and accessed health services. A major consequence of the move into the community has been that the responsibility for the health of people with learning disabilities was devolved from the nurses within the institutions to that of primary care General Practitioners (GPs) and paid-carers with support from the then newly formed Community Learning Disability Teams (CLDTs). These CLDTs comprised a number of specialists such as consultants in psychiatry, community learning disability nurses (CLDNs) and occupational therapists, all of whom have received specific training in working with people with learning disabilities. Since devolution, Scottish legislation has been specifically aimed at meeting the needs of people with learning disabilities. This is because people with learning disabilities have health priorities that differ from the general population (NHS Health Scotland 2004; Scottish Executive 2000a; Scottish Executive 2002). Priority areas for people with learning disabilities include sensory and dental needs, whilst respiratory disorders remain the most common cause of death (Disability Rights Commission [DRC] 2006; Raitasuo et al. 1997; Turner & Moss 1996). Furthermore, many people with learning disabilities have competing and complex health concerns alongside their ‘learning disability’, which are often poorly managed. Although they require access to specialist services, they often do not access these services (Baxter & Bradley 2008; DRC 2006; Scottish Executive 2004). This is further compounded by health professionals, including GPs in the primary and acute sector, receiving only limited training in dealing with the health needs of this group (Hames & Carlson 2006; Phillips et al. 2004). With greater life expectancy due to advances in medical science, people with learning disabilities will be exposed to the same illnesses and diseases of old age as are seen within the general population, and this will require further specialist help for diseases of older age (Bittles et al. 2002; Tuffrey-Wijne et al. 2007). This raises concerns as even when services are accessed by people with learning disabilities for general health problems, the care received has not always been appropriate, as documented by MENCAP (2007, 2012). This highlights a need for more appropriate support and service provision if the health requirements of this population are to be met.

Following the changes since 1990, responsibility for the day-to-day care of people with learning disabilities now resides within the community and with paid- and family-carers. However, not all paid-carers have training in health matters, although, in Scotland, employing organisations must adhere to the National Care Standards under the The Regulation of Care (Scotland) Act (2001). Concerns have been raised within the literature about the standard of training, as many paid-carers are not necessarily aware of the health needs of people with learning disabilities and may inadvertently discount health problems or not recognise symptoms of illness or disease (Alborz et al. 2003; Janicki et al. 2002; McCarthy 2002; Wyatt & Talbot 2013). Furthermore, studies suggest that aspects of healthcare are often not considered to lie within their remit, that they lack the necessary training or that they may refuse the treatment on behalf of the individual (Davies & Duff 2001; Gillings-Taylor 2004; Poynor 2003; Tyler et al. 2010).

For family-carers, most problems occur during transition: the move of the individual with a learning disability from children's services into adult services, which commences at 16 years of age in Scotland. Here, the young person is seen as an adult in law and able to make their own decisions if they are deemed to have the capacity to do so under the Adults with Incapacity (Scotland) Act 2000 (Scottish Executive 2000b). Transition necessitates family-carers having to make a number of adjustments, including adapting to new ways of working with services where there is less monitoring, relinquishing decision-making, and receiving little acknowledgement from service providers of their knowledge of the health needs of the person for whom they care (Grant & Ramcharan 2001; Heslop & Abbott 2007). Despite this, family-carers can play an integral part in helping with the health care of their family member with learning disability (Parish et al. 2008). With the introduction of the Public Bodies (Joint Working) (Scotland) Bill (2013), which will integrate health and social care services, there is a need for services and carers to work together to ensure that people with learning disabilities remain healthy. Findings from England suggest that health needs are still not being met despite joint working (Baines et al. (2013). This paper examines the difficulties which paid-and family-carers have identified within their role in monitoring the health in the people they support with learning disabilities. These raise concerns about how such issues will be addressed when the legislation is enacted.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References

The findings reported here are part of a larger study exploring breast cancer screening in women with learning disabilities and relate to general discussions about the health of people with learning disabilities. Health, in this context, referred to the World Health Organisation (1984) definition and no explicit definition of health was given to participants. Observation and semi-structured, one-to-one interviews were undertaken with 13 carers; however, only interview data are reported. Ethical approval for this study was granted by the local Central Office for Research Ethics Committees.

Participants

Participants were recruited with the help of gatekeepers who consisted of managers within day centres and residential homes (both independent and social work) and CLDN. In addition, a carers’ organisation was contacted to boost the numbers of family-carers. All participants had to be aged 16 years or over to take part. Fourteen paid-carers were approached, but two declined to participate. Family-carers proved to be the most difficult group of participants to recruit due to them believing they had nothing to offer the study, and only two family-carers were recruited by the gatekeepers. To increase the numbers of family-carers, a carers’ group was contacted, and they agreed to write to carers looking after family members with learning disabilities (n = 30). From the family-carers who were contacted by post, only one participated; 27 did not respond; one wrote to decline; the remaining participant became ill and could no longer participate. In total, there were 15 participants (12 paid-carers and 3 family–carers); however, two paid-carers were used for piloting the interview. In total, the views of 13 participants are reported (10 paid-carers; 3 family-carers). Hereafter paid-and family-carers will be referred to as ‘carers’ unless otherwise stated. Further details of the carers can be found in Table 1.

Table 1. Carers demographic information
 Paid-carerFamily carersComments
Sex of participants

Male = 1

Female = 9

Female = 3 
Length of experience working with people with learning disabilities2–17 years average 14 years*Life long*One paid-carer did not disclose the length of their experience

Interviews

Interview topics covered demographics, keeping healthy, the experience of breast screening and decision-making regarding it. Interviews were conducted at a place convenient to the carer, and all participants received information about the study prior to being interviewed. Before commencement of the interview, participants’ willingness to participate was reconfirmed, and assurance given that they could withdraw at any point during the interview and of the confidentiality of any information disclosed; after this, consent was obtained. Nine interviews were taped as five carers preferred notes to be taken. Of the 13 interviews undertaken, 10 were conducted on a one-to-one basis, whilst two paid-carers asked to be interviewed together, and one family-carer asked for her sister to be there for support (both women had learning disabilities). Interviews lasted approximately 35 min but ranged from 30 to 60 min.

Transcription was undertaken by the author, and the analysis was conducted in parallel wherever possible using a blended framework derived from Smith (1995), Smith & Osborn (2003) and McCarthy (1999). Trustworthiness of the themes was achieved by comparing and contrasting the interviews, peer review by two independent researchers and presentations by the author to staff at one day centre. The carers’ views were represented by three themes and pseudonyms are used in the extracts presented in the findings.

Findings

From the question posed about how the carer thought the individual(s) they supported kept themselves healthy and specific questions about breast awareness and screening (the focus of the main study), three themes emerged that related to health in a general context when supporting people with learning disabilities.

The theme ‘Care within boundaries’ explored how the carers interpreted their role and the influence they had on the health of the individual with learning disabilities whom they supported. The common element shared by the carers was that they had undefined roles in relation to overall responsibility for the health of the person they supported. What emerged was a hierarchy of responsibility for overseeing the client's health, although at times, this intersected with that of other individuals, for example, family members or health professionals who were also seen to have input which might positively or negatively affect health interventions.

The participants had been drawn from paid-carers in the daycentre and residential sector, as well as family-carers. Their roles had obvious differences and each group had different perspectives about where the responsibility for their clients’ health lay. Both the paid-carers who worked in the day centre setting saw ‘health’ as the remit of the residential-setting, but for different reasons. Nelson worked in an independent day centre and was responsible for a workshop that was run as a business to generate income for the centre. In contrast, Margaret's day centre provided activities such as art, music and baking and was partly supported by funding from Social Services. Nelson's views reflected normal working practice, in that health matters would be the remit of the occupational health department; whereas, Margaret identified the cultural differences between Social Care and Health.

“For me there's a real split between social work and health and what one sees as a health problem can very often be left out of a day service provision because it's not seen as appropriate.” (Margaret)

Despite the day-centre staff viewing health as the remit of the residential staff, those working within the residential setting revealed further divisions about the responsibility for health which were firmly rooted in the philosophy of workplace. Six of the eight residential paid-carers saw ensuring the health of their clients as part of their role.

“There's a lot more responsibility on the carers now. It's not just cooking and cleaning but everything. Health is an important part as staff have to ensure the residents are well maintained. It's their job.” (Veronica)

In contrast, Janet and Nicki, who worked in a Social Services funded home, affirmed that health was not seen as part of their responsibilities.

“To be honest health isn't encouraged here. They told me I had to forget all I knew about health as it wasn't something I needed to know. Here it's about helping the person live independently and be independent.” (Janet)

This seems contradictory as many aspects of being independent, such as being able to go out into the community, relied on being in good health. In contrast, the role of the family-carers was the most complicated as they had the relationship of parent or sibling, but were also a carer; hence, the boundaries between these roles were constantly shifting. Despite this, ensuring the health of their family member with learning disabilities was seen as part of their role, although ‘transition’ complicated this role somewhat. Kirsty was a carer for her sister, and her situation was different to that of Heather and Vicki (parent-carers) because she also had learning disabilities and received support from the CLDNs whom she consulted if she had any concerns. The parent-carers had responsibility for all decisions about health until transition, after which the young person legally became an adult and was able to make their own decisions unless there were issues with capacity. Where capacity was an issue, ‘Welfare Guardianship’ could be obtained by the family-carer (and the position is the same for paid-carers) giving the carer a legal right to remain involved in decisions. Both Vicki and Kirsty were Welfare Guardians.

“When the smear test came through they automatically phoned me and said ‘What would you like to do about this’, because I'm still her care-guardian.” (Vicki)

Heather had no Welfare Guardian rights, which meant that her daughter now made her own decisions. Relinquishing this role as decision maker had been difficult for her – she was now left out of the decision-making process and unaware of what decisions her daughter was making.

“When they move into the adult services, they are in charge, and we get to know nothing. We have to ask. We can't interfere.” (Heather)

This identified a dichotomy in making decisions about health, regarding those individuals with learning disabilities who had capacity and those who did not, and between carers with Welfare Guardian responsibilities and those without them. Although family and residential paid-carers were seen as the guardians of health for the people with learning disabilities they supported, all carers identified further layers within the decision-making hierarchy. Paid-carers noted that some family members often remained involved in the person's care. These family members were seen to constitute two groups: those who worked with the paid-carers and trusted their judgement and those who did not. For example, Elaine noted that family members often responded more to health issues raised by health professionals than by paid-carers.

“Parents put more credence on health issues being spoken about by health professionals rather than support-workers.” (Elaine)

However, whether family members saw them as helpful or interfering was dependent upon the paid-carer/family-carer relationship. Despite these problems, other paid-carers reported that family-carers were important sources of information, especially about inherited conditions.

The reasons for these views were not explored with the paid-carers, although they suggested that family-carers differentiate between health roles and care roles. This might have been due to the perception of care work, which is often associated with a low status, limited training and high turnover of staff. In this study, the average length of time that the paid-carers been working in the same post was 5 years but ranged from 1 to 11 years.

Half the paid-carers in this study also noted the poor communication within and between the care sectors and the family homes. Not knowing the health problems of their clients was potentially dangerous and could have an impact on the individual:

“They don't tell us that they have diabetes or epilepsy.” (Nelson)

This was noted by Heather, the family-carer:

“When the nurse came to tell her about her breasts….They went upstairs, and made it clear it's Holly they were here to see. So if we don't know, how can we help?” (Heather)

This disempowered Heather in supporting her daughter in this activity. This resonated within the care sector, as there appeared to be a number of unspoken boundaries about raising health issues with other sectors which might be construed as interfering or checking up on the other sector.

“There are boundary issues, do you approach a carer when you first notice something or do you wait until they say something to you about them not feeling unwell.” (Elaine)

The examples above identified a number of boundary problems for carers in terms of ensuring the health of people with learning disabilities.

The second theme, ‘Doing the best we can’, examined how the carers attempted to monitor health and the challenges that this presented. All the carers acknowledged the difficulty that people with learning disabilities have in keeping healthy due to their limited insight into their health. Consequently, all carers said that they undertook some form of surveillance of their client's health, including those who said that health was not their remit. Knowing the person well was advantageous as the carer would be better placed to monitor any changes in health or behaviour. However, unlike family-carers, some carers noted that continuity was a concern within the care sector and could inadvertently place people with learning disabilities at risk:

“The residents appreciate continuity and know who's looking after them. You can also monitor how they are doing. In other places you can't and things get missed.” (Veronica)

Within the discussions, it was noted that clients with severe/profound learning disability received closer surveillance because they were more dependent on carers for their care and less able to communicate problems. Those with mild-moderate learning disability were seen to be disadvantaged because they did not need assistance with personal hygiene which limited surveillance and placed more reliance on them discussing problems.

“We don't know what their skin is like, whether there is a rash or it is dry. Things like that that could be important.” (Fergi)

This was a concern because there seemed to be no consistent means for clients to obtain health information, with Margaret suggesting it was ‘pot luck’. Despite this, television soap operas or advertisements were identified as potential sources of information for people with learning disabilities. For example, Nelson suggested that “They are really influenced by the TV ….This is where they get the information from.” The remaining carers spoke about more formal channels such as attending groups at the daycentre, talking to the doctor and carers. No carer mentioned talking to their friends about any health problems, although some disclosed that clients often saw ‘staff’ as friends. This indicated that there were few independent sources of support outside the home.

A noteworthy finding was that Kirsty was informed about how to keep her breasts healthy from her sister, Honey, who had attended a daycentre course.

The third theme, ‘The problem is…’, reflected the difficulties of explaining health interventions to clients. A generic difficulty mentioned by all the carers was in ensuring people with learning disabilities understand what was being said. This meant that all the carers had become skilled communicators, in that they knew how to get the balance right, that is, not frightening their clients and tailoring what was being discussed to the level of their disability. The key to this skill, mentioned by over half the carers, was the importance of knowing the client.

“The longer you work with the guys, you get to know them, inside out, but it's the communication that's the hardest part.” (Emma)

Carers used different approaches to convey the health message – for example, pictures were seen as very useful because clients could visualise the procedures, whilst a quarter spoke about getting other people to talk to them or finding other resources to help explain things.

Those carers who worked with people who had severe/profound learning disabilities often had to make decisions on behalf of their client because these clients would not have capacity to consent. Sandra and Maureen worked exclusively with people with severe and profound learning disabilities. They explained that in their workplace, decisions on health were based on the following criteria: ‘best interests’, the level of distress that would be caused and the need to sedate their clients. This was in contrast to Vicki (family-carer), who would the first to be consulted about health decisions about her daughter as her Welfare Guardian. During the interviews, a further contention was identified by some of the paid-carers working in the social care sector who said that it was up to the woman to choose whether she wanted to discuss health matters.

“We have to ask them, we have to give them the right to choose if they want to talk about certain aspects of health.” (Nicki)

If the woman did not want to listen or talk, then discussion of the subject was terminated. Nicki also intimated that it was up to the client then to pick up the discussion, but this again presented difficulties such as remembering the topic or realising that there was a problem; this resonates with the point Heather (family-carer) made earlier regarding her daughter's breast awareness. Several carers also acknowledged that some people with learning disabilities would always do what their carers or parents wanted them to do just to please them. Despite this, carers consistently demonstrated awareness that people with learning disabilities were autonomous decision-makers and that they should not make the decision on their behalf.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References

The findings disclosed that all people with learning disabilities needed support to keep healthy and access health services at some point and that carers were an integral element of this support. Within the interviews, the degree of input from the carers was seen to be related to the client's level of learning disability. Those identified as having mild to moderate learning disability received less monitoring of their health whilst individuals with severe to profound learning disability underwent greater health surveillance. The people identified as responsible for the overall monitoring of health were those paid-carers in the residential setting and family-carers.

A common element disclosed in the findings was that both family and paid-carers in the residential setting had unclear roles. In relation to the latter group, it was initially assumed that health would be considered to be part of their specific role remit. However, the findings demonstrated that not all of these carers acknowledged health as an element of their responsibilities. This was especially so among those from Social Services funded areas, both within residential and daycentre settings. The philosophy of the organisation in which the paid-carers worked was therefore an important factor which influenced their beliefs and actions. The view that their remit did not encompass health may be predicated on the fact that the role and responsibilities of the paid-carers were poorly defined. This was complicated by blurred boundaries, as some family-carers also made inputs into decisions about the client's health; hence, who was ultimately responsible for decisions about the person's health was sometimes unclear.

A further consideration was that the paid-carers’ knowledge of health issues and the needs of people with learning disabilities was specific to each area and individual member of staff. There were no clear standards in place regarding training in health needs other than mandatory basic training, and this concurs with previous work (Gillings-Taylor 2004; Janicki et al. 2002; McCarthy 2002; Wyatt & Talbot 2013). This was compounded by the suggestion in the findings that unlike the care given by the family-carers, the continuity of care for the clients by paid-carers was sometimes lacking. Yet, surveillance and ‘knowing the client’ is important in order that staff can identify subtle changes in their clients’ health (Singh 1997). Movement of unregistered staff is scarcely new and is not just confined to the learning disability sector, but the lack of continuity, and training in paid-carers gives insight into why they may be inadvertently missing health issues among people with learning disabilities. This becomes more pertinent when each sector had different opinions about whether staff should broach health issues with the individual or leave it until the issue was raised by the client. In some respects, there were agreements that greater surveillance would be implemented for those with severe/profound learning disabilities. However, this was not the case for those clients who had mild/moderate learning disabilities. This again contributes to understanding why identification of health issues is often haphazard for people with learning disabilities.

Given the problems identified here, there are several key messages for policy makers. First, there is a need for a clearer career progression within the social care sector for individuals who support people with learning disabilities. This gives further leverage to recommendations from the Francis Report (2013) concerning registration and defined careers and remits. Without such safeguards, the risk remains of mistreatment of people with learning disabilities, such as that evidenced in the BBC documentary on Winterbourn View (BBC 2011). Second, it means that in those areas where health was not considered to be part of the carers’ remit, people with learning disabilities are potentially vulnerable to undiagnosed health problems. These findings suggest that rather than poorly trained ‘carers’ misdiagnosing health problems (Janicki et al. 2002; McCarthy 2002; Poynor 2003); weight should also be allocated to the context in which support and care is given. Finally, these findings raise questions not only regarding where people with learning disabilities access help with health, given that many are not in contact with health services or registered with GPs, but also for the successful integration of Health and Social Care services which is currently planned in Scotland and how differences in cultural beliefs between these sectors will be incorporated and managed in one amalgamated service. This is in addition to focusing funding for health education within the residential and parental home rather than solely in primary care.

As with the paid-carers, the role of the family-carers was unclear and, perhaps, the least obviously defined. Given the small numbers involved, few definitive conclusions can be drawn from the findings in this study. It was clear that the role of mother/sister was enduring, whilst alternating between carer and family member was difficult. Service boundaries were clear – once the child reached 16 years of age, they transferred into adult services, but this transition could be difficult for the family-carer to adapt to. This was often because it meant a change and reduction of the services provided and, for some, the relinquishing of decision-making powers. Making decisions about all aspects of their life is something that most people take for granted. However, as a consequence of their diagnosis, people with learning disability are constrained by the Adults with Incapacity (Scotland) Act 2000 (Scottish Executive 2000b) about what parts of their life they can make decisions. In this study, the family-carers were accustomed to making choices for the family member with learning disability, and, in many respects, being a family-carer incurs some form of ‘paternalism’ due to the limits on cognitive capacity. For this reason, the family-carers wanted to retain some control over care, with two choosing to become Welfare Guardians. It also helps to explain the desire to remain involved once the individual moved into residential accommodation. Heather, who was not a Welfare Guardian, had found the shift to her daughter, making her own decisions difficult. This was compounded by her being unable to be involved in aspects of her daughter's care, despite the decisions her daughter made potentially impacting on Heather's own life. In this study, there is a suggestion that, at present, parents do not seem to be equal partners in the care of their offspring. This again has implications for the integration of health and social services, as little attention or support has been given to parents’ needs or the impact of caring upon their life, despite their commitment to having their children remain in the family home.

Of note within the findings was the variable relationships between (and within) the paid- and family-carers. Relationships and, especially, communications between the different personnel and organisations regarding a person's health could be poor. This again identified another locus where health problems could be exacerbated. Furthermore, both paid- and family-carers felt disempowered by other gatekeepers who had input into the ‘health'of the individual with learning disabilities. In their discussions on health with paid-carers, family-carers gave precedence to the opinions of health professionals. Similarly, Heather, the family-carer, was not allowed to take part in the discussion about breast health with the nurses who visited her daughter. The conundrum here for carers is that whether they raise issues about health or not, health is essentially dealt with as the remit of the health professional, but ensuring the health needs are met involves a partnership by all parties. Difficulties about broaching health issues between the residential and daycentre sector personnel were also identified, because each believed the other might consider this to constitute inappropriate interference. These findings are important because they identify key points of tension and potential obstacles to the integration of services. To have a seamless provision of accessible health care specifically for people with learning disability, public policy needs to target all those who provide support and care for those with learning disabilities. Recognising the discontinuities and discrepant perceptions within each service provider is an essential starting point from which to address these problems and tailor health care needs accordingly. The next step would be to formalise with whom and where the remit for health lies and to focus health education within the ‘home’ and primary care environments.

Whilst people with learning disabilities should have responsibility for their own health, in practice their level of disability dictated the degree of discretion which they were accorded. An area that remains contentious is the health education that people with learning disabilities receive, as there is no definitive evidence to demonstrate that this is effective and no standardised routes to deliver this knowledge. Findings in this study support previous work, suggesting that informal delivery of health education, for example, through television soap operas and advertisements, was the main source of information for people with learning disabilities rather than friends (Davies & Duff 2001; McCarthy 1999). Carers also played a role in disseminating material through skilful adaptation of information to take account of the level of understanding and their experience of ‘knowing their clients’ to facilitate discussions about health. However, initiating such exchanges is subject to the philosophy of the paid-carer and whether there was input from the family-carer. The lack of formal routes of health education potentially places people with learning disabilities at a disadvantage. This is particularly the case for those who rely on support from paid-carers and especially so for those in social service-led environments due to inconsistencies about whether health is part of the carers’ remit and their knowledge about health issues specific to their clients. Education of paid-carers has already been raised, but Swaine et al. (2013) highlight the issue of health education for family-carers to support the individual with learning disability. What remains clear is that discussing health with people with learning disabilities continues to be difficult and is often dependant on the level of learning disability, the philosophy of the organisation where the care is provided and the motivation, knowledge and education of the carers.

It must be remembered that these findings are not representative of the whole population of people with learning disabilities. There are limitations to the conclusions and generalisations that may be drawn from this study given the small numbers and the un-representativeness of the sample. One area in particular is that of the very low response rate of family-carers. As stated, feedback from the nonparticipating family-carers was that they felt they had nothing to offer. This response is puzzling; however, Heather's experience with the nurses who came to discuss breast awareness with her daughter may help in interpreting this. Although it was not possible for the researcher to approach family-carers face-to-face, this method of approach might have been more effective than a letter. Despite this, these findings demonstrate an inconsistency about how health was assured and who was responsible for the health of people with learning disabilities, which in essence depended upon those who supported them. This contributes, albeit unintentionally, to the maintenance of inequalities and inconsistencies in the care provided for people with learning disabilities and points to the challenges for the integration of health and social care services.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References

Thanks go to all the carers that participated in the study and to C Kennedy., L Kilbride and D Horsburgh for their supervision.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Discussion
  6. Acknowledgements
  7. References
  • Alborz A., McNally R., Swallow A. & Glendinning P. (2003) From the cradle to the grave: a literature review of access to health care for people with learning disabilities across the lifespan. Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R and D (NCCSDO): Manchester.
  • Baines S., Emerson E., Hatton C., McLean J. & Glover G. (2013) Joint Strategic Needs Assessments: How well do They Address the Needs of People with Learning Disabilities? Available at: http://www.calderdaleforward.org.uk/workspace/uploads/files/ihal-2013-09-jsnasr-524304a262a32.pdf (last accessed on 16 November 2013).
  • Baxter S. & Bradley P. (2008) Reversing the trend: learning disability outcomes in cancer care. Learn Disabil Pract, 11: 226.
  • BBC (2011) Panorama: winterbourn view documentary. London, BBC.
  • Bittles A.H., Patterson B.A. & Sullivan S.G. (2002) The influence of intellectual disability on life expectancy. J Gerontol A Biol Sci Med Sci, 57: 4702.
  • Davies N. & Duff M. (2001) Breast cancer screening for older women with intellectual disability living in community group homes. J Intellect Disabil Res, 45: 2537.
  • Disability Rights Commission (2006) Equal treatment: closing the gap. A formal investigation into the physical health inequalities experienced by people with learning disabilities and/or mental health problems. London, Disability Rights Commission.
  • Emerson E. (2004) Deinstitutionalisation in England. J Intellect Dev Disabil, 29: 7984.
  • Francis R. (2013) The Final Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. Available at: http://www.midstaffspublicinquiry.com/report (last accessed on 20 May 2013).
  • Gillings-Taylor S. (2004) Why the difference?: advice on breast examination given to carers of women who have learning disability and women who do not. J Learn Disabil, 8: 17589.
  • Grant G. & Ramcharan P. (2001) Views and experiences of peoplpe with intellectual disabilities and their families (2) The family perspective. J Appl Res Intellect Disabil, 14: 36480.
  • Hames A. & Carlson T. (2006) Are primary health care staff aware of the role of community learning disability teams in relation to health promotion and health facilitation? BR J Learn Disabil, 34: 610.
  • Heslop P. & Abbott D. (2007) School's Out: pathways for young people with intellectual disabilities from out-of-area residential schools or colleges. J Intellect Disabil Res, 51: 48996.
  • Janicki M.P., Davidson P.W., Henderson C.M., McCallion P. & Taets J.D. (2002) Health characteristics and health services utilization in older adults with intellectual disability living in community residences. J Intellect Disabil Res, 46: 28798.
  • McCarthy M. (1999) Sexuality and women with learning disabilities. London, Jessica Kingsley.
  • McCarthy M. (2002) Going through the menopause: perceptions and experiences of women with learning disability. J Intellect Dev Disabil, 27: 28195.
  • Mencap (2007) Death by indifference. London, Mencap.
  • Mencap (2012) 74 deaths and still counting. London, Mencap.
  • NHS (1990) NHS care in the community act. London, OPSI.
  • NHS Health Scotland (2004) Health needs assessment of people with learning disabilities. Glasgow, NHS Scotland.
  • Oakes P. (2007) Sexual and personal relationships. In: Gates B., editor. Learning disabilities: towards inclusion, 5th edn. London, Churchill Livingston: 54966.
  • Parish S.L., Moss K. & Richman E.L. (2008) Perspectives on health of adults with developmental disabilities. Intellect Dev Disabil, 46: 41126.
  • Phillips A., Morrison J. & Davis R.W. (2004) General practitioners’ educational needs in intellectual disability health. J Intellect Disabil Res, 48: 1429.
  • Poynor L. (2003) Being ‘breast aware’. LDP, 6: 114.
  • Raitasuo J., Molsa S., Raitasuo S. & Mattila K. (1997) Deaths among the intellectually disabled: a retrospective study. J Appl Res Intellect Disabil, 10: 2808.
  • Scottish Executive (2000a) Same as you?: a review of services for people with learning disabilities. Edinburgh, Scottish Executive.
  • Scottish Executive (2000b) The adults with incapacity act (Scotland). (Chapter 5). Edinburgh, Scottish Executive.
  • Scottish Executive (2002) Promoting health, supporting inclusion the national review of the contribution of all nurses and midwives to the care and support of people with learning disabilities. Edinburgh, Scottish Executive.
  • Scottish Executive (2004) Adults with learning disabilities implementation of the ‘Same as you?’ Scotland. Edinburgh, Scottish Executive National Statistics Publication.
  • Scottish Government (2013) Public bodies (Joint Working) (Scotland) Bill (2013). Edinburgh, Scottish Government.
  • Scottish Statuary Instruments (2001) The Regulation of Care (Scotland) Act 2001. Available at: http://www.legislation.gov.uk/ssi/2002/162/pdfs/ssi_20020162_en.pdf (last accessed on 20 May 2013).
  • Singh P. (1997) Prescription for change: a Mencap report on the role of GPs and carers in the provision of primary care for people with learning disabilities. London, Mencap.
  • Smith J.A. (1995) Semi-structured interviewing and qualitative analysis. In: Smith J.A., Harre R., Van Langenhove L., editors. Rethinking methods in psychology. London, SAGE.
  • Smith J.A. & Osborn M. (2003) Interpretive phenomenological analysis. In: Smith J.A., editor. Qualitative psychology: a practical guide to research methods. London, SAGE.
  • Swaine J.G., Dababnah S, Parish S. L. & Luken K. (2013) Family caregivers’ perspectives on barriers and facilitators of cervical and breast cancer screening for women with intellectual disability. Intellect Dev Disabil, 51: 6273.
  • Tuffrey-Wijne I., Bernal J., Butler G., Hollins S. & Curfs L. (2007) Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs, 58: 809.
  • Turner S. & Moss S. (1996) The health needs of adults with learning disabilities and the Health of the Nation strategy. J Intellect Disabil Res, 40: 43850.
  • Tyler C.V., Zyzanski S.J., Panaite V. & Council L. (2010) Nursing perspectives on cancer screening in adults with intellectual and other developmental disabilities. Intellect Dev Disabil, 48: 2717.
  • World Health Organisation (1984) Health promotion: a discussion document on the concept and principles. Copenhagen, World Health Organisation Regional Office for Europe.
  • Wyatt D. & Talbot P. (2013) What knowledge and attitudes do paid carers of people with a learning disability have about cancer? Eur J Cancer Care, 22: 3007.