health checks final report 2 - nhs wales€¦ · monitoring the public health impact of health...

Monitoring the public health impact of health

checks for adults with a learning disability in Wales

Final report of the joint Public Health Wales /WCLD project group,February 2010

Jonathan Perry, Mike Kerr, David Felce,Stuart Bartley & Judith Tomlinson

“Monitoring the public health impact of health checks for adults with a learning disability in Wales.” Final report of the joint Public Health Wales/WCLD project group, February 2010.

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Jonathan Perry, Mike Kerr, David Felce, Stuart Bartley, Judith Tomlinson

Contents

Page

Summary 3

1 Background 4

2 Number of health checks carried out2.1 Method2.2 Results2.3 Alternative Local Health Board arrangements2.4 Conclusion

5

3 Perspectives of people with learning disabilities3.1 Methodology3.2 Results3.2.1 Before the health check3.2.2 During the health check3.2.3 After the health check3.2.4 Status of health checks

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4 Lessons for best practice4.1 Overview4.1.1 Awareness raising4.1.2 Invitations and appointments4.1.3 Accessible advice4.1.4 Process4.1.5 Post health check4.2 The PEARL education pack4.3 Role of family/carers4.4 Role of GPs

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5 Audit + software 25

References 26


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Summary

• 4,493 health checks were undertaken in Wales in 2008/9 (41% of the estimated 11,046 people aged 16 years and over on learning disability registers in Wales in 2008/9 and possibly about 43%of people aged 18 years and over).

• This represents an increase of 43% compared with health checks undertaken in the first year of the initiative.

• The number of health checks undertaken has increased each year since 2006.

• Between 2007/8 and 2008/9 the proportion of people on registers who received a health check increased in 18 of the 22 original LHBs.

• When data were aggregated according to the new Health Boardareas, the number of health checks increased in 5 of the 7 new areas(2008/2009).

• Compared with 2007/2008, there was a6% average increase across the 22 LHBs in the proportion of those eligible for checks who actually received one in 2008/2009.

• Geographical disparity in health check receipt is still an issue but the gap is closing with some areas which previously had low uptake demonstrating significant improvement. However this is an area where liaison and awareness raising by Public Health Wales can potentially improve uptake rates.

• User experience of the health check is generally positive.

• Suggestions for improving the health check process have been made by service users and guidance is available from the PEARL education pack. It is recommended that the latter be updated and disseminated.

• The use of new software Audit +, will allow electronic extraction of data from the LD health check in 2010 from 95% of practices


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1.Background

Health inequities between people with intellectual disabilities and the general population have been well documented (van Schrojenstein Lantman-de Valk and Walsh, 2008). For example, people with intellectual disabilities have health conditions such as epilepsy, sensory impairment, respiratory problems, dental problems and incontinence, more often or more seriously than the general population (Beange et al., 1995, Turner and Moss, 1996, Kapell et al., 1998, Sutherland et al., 2002, Ouellette-Kuntz, 2005). People with intellectual disabilities are significantly more likely to be prescribed psychotropic medication than the prevalence of psychotic disorders would suggest (Robertson et al., 2000). They are at significant risk of deviating from normal weight and are more likely to lead sedentary lives (Emerson, 2005). Although life expectancy of people with intellectual disabilities is longer than in the past, it is shorter than in the general population (Beange et al., 1995, Bittles et al., 2002).

The disparities in health between people with intellectual disabilities and the general population extend to their health care. People with intellectual disabilities are more likely to have untreated morbidity (Howells, 1986, Wilson and Haire, 1990, Beange and Bauman, 1991, Webb and Rogers, 1999) and they are less likely to experience health promotion and disease prevention activities (Rimmer et al., 1993, Sullivan et al., 2003). When people with intellectual disabilities access primary care they may encounter barriers to high quality care including, communication difficulties (Beange et al., 1995, Wilson and Haire, 1990), behavioural difficulties (Minihan and Dean, 1990), and lack of specialist GP training (Lennox et al., 1997).

Section 7 of the Welsh Assembly’s Learning Disability Strategy (Welsh Assembly Government, 2004)included the service principle that people with learning disabilities have an equal right of access to primary health care services, and secondary and specialist health provision. Enhanced Services under the General Medical Services (GMS) contract,including a practice based register and regular audited formalised health checks, were proposed as a way for local health boards to address the health problems experienced by people with learning disabilities.

A Primary Care LD Directed Enhanced Service (DES) was introduced in Wales in April 2006to promote early detection and treatment of health problems. Such annual health checks were widely supported by patient and carer groups and research evidence(Martin et al., 1997, Baxter et al., 2006, Felce et al., 2008, Lennox et al., 2007).

TheWelsh Health Check for Adults with a Learning Disability to be used for health checks was derived from the Cardiff Health Check developed by Kerr et al.(1998). It covers basic demographic information and key health and social care contacts; immunization; uptake of cervical and breast screening and mammography, and chronic illness; a systems enquiry of the respiratory,


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cardiovascular, abdominal, CNS, genitor-urinary and gynecological systems, epilepsy and behavioural disturbance; a physical examination of the aforementioned ‘systems’ as well as vision, hearing, mobility and communication; a syndrome-specific check and a medication review.

An Evidence-Based Quality Improvement Toolkit was available as a resource to support the health check (National Public Health Service for Wales Primary Care Quality and Information Team, 2008).

The DES was subject to an annual review and between 2007 and 2008, its status changed to that of a Local Enhanced Service(LES), before reverting to DES status in 2008-2009.

In April 2007 Welsh Assembly Government funded a joint proposal submitted by the National Public Health Service for Wales (NPHS -which became part of “Public Health Wales” in February 2010)and the Welsh Centre for Learning Disabilities (WCLD)to monitor and evaluate the initiative over a three year period. There were three strands to the evaluation:

• First, data were collected on the number of health checks undertaken each year, and summarised on an LHB by LHB basis, and, following the reorganisation of NHS Wales which came into effect on October 1st

2009, results are also broken down by the seven new ‘unified’ local health boards.

• Second, a qualitative study was carried out to find out the views of people with learning disabilities who had experienced health checks.

• The third strand involved the development of a learning disabilities module for the Audit+ software which will enable the LD health check data to be extracted from GP clinical information systems for analysis.Development of this last element has taken time and the first data have only been available in the month of writing. We are, therefore, proposing to extend the current project by six months without additional funding in order to produce a subsequent report which will contain an analysis of Audit+ data.

2.Number of health checks carried out

2.1 Methodology

The Welsh Assembly Government provided data on the number of health checks completed for adults on learning disabilities registers in the 2006/7, 2007/8 and 2008/9 financial years. Data were broken down by local health board and are summarised in Table 1. Data were based on GPs’ submissions to the Community, Primary Care and Health Services Policy Division of the Welsh Assembly Government.


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At the end of March 2009 there were14,068 people on learning disability registers in Wales of whom 3,022 were under the age 16, so there were 11,046 people with learning disabilities aged 16 or over. Corresponding figures for 2008 and 2007 were 10,931 and 10,104 respectively. Data are not available on the proportion of people on the learning disability registers who are aged 18 or over so a caveat to the results presented below, is that as health checks are only available to adults, and these data include 16 and 17 year olds, the results are effectively slightly deflated. In other words, for each LHB, the proportions of adults on the register who had received health checks should be slightly higher than is presented here. However, assuming that the proportion of 16 and 17 year olds on the register is approximately equal in each LHB, comparisons between LHBs should be valid. A further caveat is that the results presented below are based on data which were available in October 2007, May 2008 and June 2009. Any GP submissions after those dates were not included in the respective year’s figures.

2.2 Results

Table 1 summarises the results for the three year period. Across all LHBs 4,493 of the 11,046 people aged 16+ on the registers had a health check in 2008/9. This amounts to 41% of those on the register. Bearing in mind that this includes 16 and 17 year olds, the proportion of adults who received a health check would be somewhat higher than 41%(possibly as high as 43%).

There has been a year on year improvement in uptake since the first year of the health checks programme. Overall, the proportions of people with learning disabilities who received a health check in 2006/2007, 2007/2008, and 2008/2009 were 31%, 34% and 41% respectively. At the LHB level, there was an increase in uptake in all but four areas between 2007/2008 and 2008/2009 (Figure 1). In some cases, the increase was significant. In Conwy and Wrexham, for example, the majority of those eligible for health checks now receive them. About two thirds of those eligible for checks in Gwynedd and Swansea receive them, and about half in Neath Port Talbot, Torfaen and Denbighshire do so. From relatively low baselines there have been significant improvements in uptake in Rhondda Cynon Taff and Monmouthshire.

Table 2 shows that when data were aggregated according to the seven new Health Board (HB) areas, a similar overall pattern of improvement was apparent. Health checks undertaken in 2008/2009, as a proportion of the number of people eligible for checks, increased in 5 of the 7 new HB areas when compared with the previous financial year. In the case of Cwm Taf the proportion was up by nearly a quarter.


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Table 1: Number/proportion of health checks undertaken 2006-20091

1These data are based on GPs’ submissions to the Community, Primary Care and Health Services Policy Division of the Welsh Assembly Government2 Based on SDR155/20073 Based on SSDA901/20084SSDA901/2009

Local Health Board

People on learning disability register4

aged 16+

Health checks 2006/7

% of people (16+) who had a health check 2006/72


% (16+) who had a health check 2007/83



% change 2007/8 to 2008/9

Conwy 326 267 61 290 68 288 88 +20

Wrexham 410 234 65 216 52 307 75 +23

Gwynedd 549 300 56 293 55 362 66 +11

Swansea 768 438 60 410 56 468 61 +5

Neath Port Talbot 553 60 11 186 33 306 55 +22

Torfaen 326 168 51 128 36 170 52 +16

Denbighshire 356 171 53 193 55 182 51 -4

Flintshire 540 121 24 205 42 240 44 +2

Bridgend 523 140 27 144 28 226 43 +15

Pembrokeshire 450 188 39 190 40 194 43 +3

Monmouthshire 286 37 13 40 15 108 38 +23

Carmarthenshire 740 183 28 242 33 276 37 +4

Rhondda Cynon Taff 855 40 5 64 8 312 36 +28

Anglesey 268 34 13 77 30 94 35 +5

Cardiff 1003 326 33 305 30 335 35 +5

Caerphilly 639 127 20 120 19 204 32 +13

Ceredigion 296 99 35 115 41 71 24 -17

Vale of Glamorgan 468 41 11 83 20 108 23 +3

Powys 529 141 28 113 20 123 23 +3

Blaenau Gwent 335 22 7 87 28 37 11 -17

Newport 593 - - 240 43 62 10 -33

Merthyr Tydfil 233 7 3 7 3 20 9 +6

Total 11046 3144 - 3748 - 4493 - -

Mean 502 150 31 170 34 204 41 +6


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Figure 1Uptake of health checks: Percentage change between 2007/8 and 2008/9

There is still considerable variation in uptake between the best and worst performing areas. This is more obvious when data are analysed at the level of individual LHBs (Table 1). For example, in 2008/2009 the number of health checks undertaken as a proportion of the total possible was 79% greater in Conwy than was the case in Merthyr Tydfil. Areas like Rhondda Cynon Taff and Monmouthshire have demonstrated that improvement is possible and there is a need for this to be replicated across the board so that the variation in levels of uptake rates diminishes.


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Table 2Uptake of health checks 2006/7to 2008/91 by new HB area

New Health Board

People on learning disability register aged 16 and over4


% of people (16+) who had a health check 2006/72



% change 2006/7 to 2007/8



% change 2007/8 to 2008/9

Betsi Cadwaladr University 2449 1127 47 1274 51 +4 1473 60 +9

Hywel Dda 1486 470 33 547 37 +4 541 36 -1

Powys 529 141 28 113 20 -8 123 23 +3

Abertawe Bro Morgannwg University

1844 638 - 740 41 - 1000 54 +13

Cwm Taf 1088 47 5 71 7 +2 332 31 +24

Cardiff & Vale University 1471 367 26 388 27 +1 443 30 +3

Aneurin Bevan 2179 354 17 615 29 +12 581 27 -2

Total 11046 3144 - 3748 - - 4493 - -

Mean 1578 - 26 - 30 +3 - 37 +7

1These data are based on GPs’ submissions to the Community, Primary Care and Health Services Policy Division of the Welsh Assembly Government2SDR155/20073based on SSDA901/2008 4based on SSDA901/2009

Low proportions of health checks in some LHB areas might reflect low uptake rather than, or as well as, low rates of provision by GPs .Between 2006 and 2007 data were available on the number of health checks offered (for 15/22 LHBs), as well as the number of invitations which were accepted (14/22 LHBs, Table 3). On average, 89% of people were offered a check (range, 66-100) and 33% of these were translated into actual health checks (range, 5-76). Data on invitations issued during 2007/2008 and 2008/2009 were not available. However, the 2006/2007 data suggest that variation between LHB areas in the number of checks carried out was an uptake issue rather than anavailability issue. (NB As a proportion of people aged 18 and over (as opposed to 16 and over) the number of invitations issued would have averaged even more than 89%). In Conwy, Caerphilly, Carmarthenshire and Newport more invitations were issued than there were people on the register. This indicates a discrepancy between GP registers of people with learning


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disabilities and local authority registers. In these instances, it seems as if health checks were sometimes offered to people who did not have a learning disability severe enough to warrant being on the social services register.

Table 3: Health check invitations issued: 2006-20071

Local Health Board

Number of adults on learning disability register2

Number of invitations

issued

Proportion to which letters

were sent (%)

Proportion of letters which

resulted in health checks

(%)

Torfaen 331 - - -

Conwy 436 470 100 57

Swansea 730 577 79 76

Denbighshire 322 274 85 62

Gwynedd 534 491 92 61

Pembrokeshire 485 - - -

Cardiff 1000 - - -

Neath Port Talbot 544 - - -

Bridgend 528 489 93 29

Ceredigion 280 262 94 38

Caerphilly 650 672 100 19

Powys 502 430 86 33

Carmarthenshire 648 680 100 27

Flintshire 505 490 97 25

Anglesey 255 - - -

Monmouthshire 283 - - -

Vale of Glamorgan 390 326 84 13

Blaenau Gwent 316 203 64 11

Rhondda Cynon Taff 831 764 92 5

Merthyr Tydfil 205 135 66 5

Newport 478 513 100 -

Wrexham 362 - - -

Total 10615 6776 - -

Mean 483 452 89 33

1These data are based on GPs’ submissions to the Community, Primary Care and Health Services Policy Division of the Welsh Assembly Government


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2SDR155/2007.

2.3 Alternative Local Health Board Arrangements

The information on alternative arrangements that LHBs (and now the 7 Health Boards) make for ensuring that everyone who is eligible can access a health check is not readily available. This is partly a consequence of the NHS reorganisation and it is anticipated that full information on this will not be available till May 2010 when a supplementary report will be provided.

Nevertheless, anecdotal evidence and informal discussion has indicated that some practices have initially been reluctant to undertake the LD health checks. Some LHBs have employed other GPs from nearby practices to undertake the health checks to address this. Whilst this action ensures the health check is undertaken, it is not the preferred course of action. Undertaking a health check in the practice a person is registered with enables practice staff to get to know patients, their families and carers and to have a greater understanding of their health needs.

Although some practices have shown a reluctance to engage in this area of work, if offered further support from HBs they can become more prepared to undertake the checks within the practice. The steering group, in conjunction with partner organisations, has worked closely with LHBs and primary care providers to identify barriers to undertaking health checks. Measures, such as enhanced training for specific practices, have been put in place and have resulted in an increase in the number of health checks undertaken.

2.4 Conclusion

Irrespective of the reason for it, geographical disparity in health checking is unacceptable and addressing it should continue to be a priority for the new Health Boards. However, that there remains such disparity should not detract from the positive picture which emerges from these data overall. Since the first year of the health checks initiative, uptake increased by 43% from 3144 health checks performed to 4,493. The health checks initiative is collaboration between bodies such as the Welsh Assembly Government, the National Public Health Service (now part of Public Health Wales),Men cap and All Wales People First, and these data illustrate what can be achieved by such collaboration. The monitoring undertaken by WCLD and NPHS included the publication of a series of progress reports which included annual ‘league tables’. To this extent the monitoring was a part of the health check implementation process. How much this has affected provision is not known.


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3. Perspectives of people with learning disabilities

3.1 Methodology for user engagement

To elicit user views a focus group methodology was adopted. Active participation in a focus group necessitates a reasonable level of language ability. Inevitably, this restricts the pool of potential focus group participants because problems with comprehension and expression are common amongst people with learning disabilities. However, focus groups have a number of advantages over structured interviews for this client group. For example, they may be perceived as less threatening and more conducive to open discussion and they are less likely to be based on an agenda set by researchers. Focus groups on health issues have been used successfully with this client group on three previous occasions. The methodology was approved by the South East Wales Research Ethics Committee.

Sample

The intention was to recruit a sample of five groups of 20 people with learning disabilities from across Wales. Clearly, a convenience sample of 100 people is unlikely to be representative of the people with learning disabilities who received a health check. Indeed, the language demands of focus group presentation make it inevitable that the sample will be biased towards people with greater skills. Moreover, in order to maximise responses to invitations to participate in the study, people were recruited from the 13 unitary authorities known to have had the highest uptake of health checks. To recruit the sample researchers collaborated with All Wales People First (AWPF), an organisation which coordinates a number of local self advocacy groups throughout Wales. Advocacy officers at people first groups in each of the 13 areas invited people who had had a health check to attend one of the five focus group meetings. The locations of the five focus group meetings, together with the areas in which participants lived and the number of people with learning disabilities at each meeting, are shown in Table 1.

Table 1:Focus Group Venues and ConstitutionVenue location Areas represented Number of

participantsCardiff Cardiff, Vale of Glamorgan, Rhondda

Cynon Taff6

Brecon Brecon, Newport 6Bridgend Bridgend 5Narberth Ceredigion, Swansea, Carmarthenshire,

Pembrokeshire11

Conwy Denbighshire, Flintshire, Gwynedd, Wrexham

11


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In total 54 people attended the meetings of whom 39 had learning disabilities (17 women and 22 men).

The sample size was lower than anticipated. There are a number of possible reasons for this. First, the inclusion criteria (e.g., experience of a health check) restricted the number of people who could participate. In addition, invitations to participate in the study coincided with the end of the financial year and it was reported that anxiety about the continued funding of local people first groups might have had an impact on the willingness of group members to take part.

Meeting format

Meetings were scheduled to last for about three hours and were followed by a lunch. Participants were given an agenda which was written in an accessible way and accompanied by pictures. This was explained by the researcher who also described the purpose of the project and what would be involved, before distributing consent forms for people to sign. Potential participants were given an assurance of anonymity and confidentiality. This procedure had been sanctioned by the research ethics committee.

Focus group discussions were split into three main themes: before, during, and after the health check. If necessary, groups were subdivided so that there were no more than six people per group. Each group was facilitated by a People First advocacy support worker who had been given a list of prompts/discussion topics to be used if the conversation faltered.

The views expressed were recorded onto flip charts so that everyone present could see what was being written down. The information recorded is a combination of direct quotations and summaries of group opinions. The role of the researcher was not to participate in the discussion but to ensure that the notes written on the flip charts reflected accurately the content and meaning of what had been said. Carers and supporters contributed to the discussion very little and their comments were not recorded.

Analysis

After each meeting a researcher extracted emerging themes from what had been written on the flip charts during the meeting. Where possible, direct quotations were transcribed to illustrate the points being made. A second stage was to combine the notes from the separate meetings and produce a balanced report of the issues which had been discussed.

3.2 Results

The results are described under the three headings used in the meetings themselves: before, during and after the health checks. There are a number of caveats. First, there was a lack of consensus about what a health check was.


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This was manifested in a lack of discrimination between health checks and other visits to health professionals. A combination of having a learning disability and the interval between the health check and the focus group meeting which, in some cases, was about a year, meant that some people had difficulty remembering in detail what happened at the health check. A third note of caution is that discussions tended to be more structured than is ideal for a focus group. Again, in part this is probably a consequence of the relatively complicated nature of the subject area coupled with the fact that the discussants had cognitive deficits and therefore, tended to rely more heavily on facilitators’ prompts. Finally, research evidence suggests that, as with the general population, people with learning disabilities are more likely to report satisfaction than dissatisfaction. Indeed, following several of the meetings, support workers who had accompanied people expressed surprise at how positive the person’s comments had been.

3.2.1 Before the health check

Invitations

Most people received an invitation to have a health check from their GP. Typically this was in the form of a letter but occasionally people were invited by telephone and some people received a letter and a ‘phone call. In one local authority, everybody registered as having a learning disability was sent a letter informing them of their entitlement to a health check and asking them to contact their GP to arrange it.

Explanations

The invitation letters sent by GPs generally included some explanation of what a health check is. These varied in detail. For example, some letters simply stated a date and time to attend the surgery. At the other end of the scale was a person who said that after receiving the letter she knew that the health check was a “review of blood pressure, weight, medication” and that she should not eat before the health check. Typically, for those people who lived with support from others, the person providing the support explained about health checks in more detail. It was the case that, often, it was the more able people who lived relatively independently, who were least ‘prepared’ for the health check. Although it might have been related to the way the study sample was recruited, local People First groups were cited most frequently as the main source of information about health checks. One individual reported having received an explanatory ‘picture letter’ from his community learning disabilities team. Further explanation of what would be involved was often provided by the nurse or GP immediately before, or during the health check.

Despite the types of explanation mentioned above, many participants reported uncertainty and anxiety about what would happen. Generally, anxieties were alleviated once the person was having the health check, but they were a


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cause of concern in the period between receiving the invitation and attending for the check.

Confusion

Following on from the previous topic, and as mentioned in the caveats at the start of the results section, it was clear that there was considerable confusion about health checks – even after the event. To a large extent this might be attributable to the time that had elapsed between the check and the focus group meeting allowing for other ‘non health check’ visits to the GP to have occurred in the intervening period. However, there were a few instances where people had attended the focus group thinking they had received a health check but it became clear during the meeting that, in fact, they had not. For example, one man reported that his invitation for a health check had come from his local Jobcentre Plus. It emerged during the conversation that what he had thought was a health check was actually a request from the DWP for him to visit a GP as part of an assessment of his eligibility to receive a disability living allowance.

Appointments

Participants had either been allocated an appointment by the GP or asked to contact the surgery to make an appointment. Whichever approach had been used, people said they wanted appointments to be at times convenient to them. Appointments which clashed with day services or other activities were particularly unpopular. People wanted flexibility in making appointments and in general, they reported that surgeries were accommodating. The jury seemed to be out on automated telephone answering systems with some people finding them straightforward to use and others finding them confusing. Several people reported a preference for visiting the surgery to make an appointment, rather than telephoning. Arranging appointments was not an issue for people who were more dependent on others for support.

With respect to choice of doctor, familiarity was a more important concern for people than gender. In general, participants said they preferred to have the health check conducted by their own doctor regardless of whether this was a man or a woman.

Access

In general, people reported no difficulty travelling to their doctor for the health check. As with making appointments, the people who were most dependent on others for support had the least difficulty because if they were unable to travel independently would take or accompany them to the surgery. Those who were able to travel independently were more likely to report problems with access, for example one man said that the extent to which travelling to his GP was problematic.


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“depends on buses - fares have gone up and it’s twelve pounds for a taxi”.

However, for most people, GP practices seemed to be within easy walking distance.

Reception

The vast majority of participants were positive about receptionists at GP practices commenting that they were aware of special needs and very accommodating. A few people reported difficulties with receptionists, but this was the exception rather than the rule. One thing that people disliked was having to fill in forms.

The length of time which people waited before their appointments varied from a few minutes to a couple of hours. Clearly, no one liked having to wait too long. A few people had part of the health check done by a nurse and part done by a GP and, effectively, had to wait twice. This was unpopular.

Prompt: “Did you have to wait long to see the doctor?”Response: “Doctor sends time for an appointment, but once you get here you wait for hours on end…”

Some practices used a supermarket delicatessen style ‘ticket system’ and some had a computerised self-service ‘check-in’ system. Both of these were viewed as acceptable by those participants who had experienced them. One person objected to waiting too long on the grounds that they felt guilty about the accompanying support worker having to wait as well – especially if it meant that the support worker had to work longer than their normal shift.

People were positive overall about the standard of waiting rooms although there was some call for more accessible literature, chairs rather than benches, and more room for wheelchair users.

Prompt: “What was the waiting room like?”Responses: “... quite clean”; “can’t understand the leaflets, don’t understand what it is”; “Some are ok, some are a bit cramped”.

3.2.2 During the health check

Communication

In general, respondents felt that GPs communicated clearly and did not use jargon.

“The nurse spoke to me properly and the doctor spoke to me properly. It was alright”“They used small words”


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A minority of respondents were uncomfortable with being questioned about their health.“...it was all personal. They ask you loads of questions. They were very difficult”.

One person commented that communication by doctors tended to be directed towards carers. In a similar vein, some participants felt that the person accompanying them had done too much of the talking. In response to such comments, other group members said they had not experienced this but that they would be annoyed if they had.

Most people were given opportunities during the health check to ask questions and they felt that the doctor listened and seemed to understand. A minority of participants had not had a chance to ask questions.

Prompt: “Did you have the chance to ask questions during the health check?”Responses: “No, the doctor just asked me questions”; “[my carer] was all yapping for me”; “I suppose people, in a way, are shy”; “I think it’s really bad when someone speaks over the disabled person”; “It’s your appointment so basically you should be able to say what you want to say”.

Process

Most people were happy with what happened during the health check. Several people said that each procedure (e.g., taking blood pressure) was explained to them beforehand. The vast majority felt that plenty of time had been allowed for the check and that it didn’t feel rushed.

“She gave me time to think about it”; “They take extra time to find out what the matter is”.

Areas which caused anxiety in several individuals were blood tests, breast examinations and cervical smears. Apart from this, most people felt calm about the process.

“They had to check to see if you had cancer and check to see if your breasts were okay. When they touched your chest, that’s when I didn’t like it”; “Don’t mention that word. I hate ‘em”. [re: smear tests]

The advice given to patients during the check appeared to focus predominantly on diet and exercise. In addition, there was a view amongst several people that the advice was rather prescriptive and a rationale for the doctor’s recommendations was not always given.

Prompt: “Did you get useful health advice?”Responses: “[I was told to] cut down on cola”; “[I was told to] lose a bit of weight, do exercises, eat healthily”.


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A common point made by people who attended their health check independently was that, after the visit, they struggled to remember what had been discussed. A few people had been given things like diet sheets to take home, and most people were in favour of some form of accessible written or audio/visual information to supplement the check.

On the whole respondents were happy with the level of privacy during the health check, although there were a few exceptions.

Prompt: “Was it private?”Responses: ” Yes, they closed the door”; “My doctor is very keen on that front”; “We would be asked if a trainee could be there”; “They’ve got curtains. Blinds would be better”; “The curtain didn’t go all the way round like it should do”.

3.2.3 After the health check

Not everyone received feedback after the health check and most seemed to understand that ‘no news is good news’. Some people were given results of tests over the telephone fairly soon after the check. In cases where health checks resulted in follow-up referrals, the reasons for referrals were not always explained, or at least, were not always understood. For example, one person was diagnosed at hospital as having diabetes. However, when she had been referred to the hospital following the health check, the GP had not informed her that he suspected diabetes. The lady was angry that she had not been kept informed throughout the process. A few participants agreed that doctors could be ‘overprotective’ in this way.

Some participants felt that communication between GPs and hospitals was poor. For example, one physically disabled lady was referred to a cardiologist following the health check. However, the GP failed to inform the hospital of her physical disability. Consequently, it was only after a visit to the hospital and a long wait to be seen, that she was informed that she would be unable to have the planned test (which involved a treadmill) because of her physical disability. The person concerned felt that the situation could have been avoided if communication between the GP and the hospital had been better. People commented that the interval between the health check and follow-up hospital appointments could be lengthy. In contrast to access to GP surgeries, travel to hospitals for follow-up tests was problematic for some.

Where medication was recommended following the check, a few people expressed dissatisfaction at the tendency for GPs to give prescriptions to carers rather than to the individuals themselves. On the other hand, some people said they preferred someone else to look after prescriptions.

Several focus group participants were under the impression that the health check was a ‘one-off’ event. Several of those who understood that health


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checks would happen annually were uncertain about whose responsibility it was to arrange the next appointment.

3.2.4 Status of health checks

The notion of visiting a doctor when one believes oneself to be in good health might seem to be counter-intuitive. A minority of participants expressed this view (e.g., “He [the doctor] was on about stuff I didn’t have, like fits”).However, the vast majority of people appreciated the need for annual health checks and welcomed the initiative. The comments below, illustrate this:

“If there is something wrong with you, they will send you for a scan…absolutely amazing”; “The health check makes you feel much better”; “You don’t know if something is wrong with you, so health checks are very important”; “I felt better, I suppose. I think it is very important to have a health check because you never know…it gives my mind a rest”; “If you don’t have a health check, you don’t know your weight, your blood pressure”; “I was happy with the doctor”; “You see that everything’s working the right way”; “It’s the only body you’ve got”.

Although the rate of response to this invitation was lower than had been expected, those who participated in the focus groups shared their experiences and points of view very effectively. There was no doubt that participants appreciated the importance of health checks and valued the opportunity to have them. Overall, people were positive about the experience. Respondents also offered some constructive criticism together with practical suggestions about ways in which the health check process could be improved.

4.Lessons for best practice

4.1 Overview

4.1.1 Awareness raising

Experience of a health check was a selection criterion for inclusion in the study. Despite this, it was clear that there was confusion about what health checks were. Several people expressed the view that, to a large extent, their awareness of their entitlement to health checks and of health issues more generally, was a consequence of their participation in local People First groups. One group had received funding to become a ‘centre of excellence’ on health related matters. The members of this group, the Swansea People First Peer Health Advocacy Project, appeared to be noticeably more aware of the purpose of health checks and health issues more generally. Although such groups have a role to play in awareness raising, many people with learning disabilities are not actively involved in them and there should be a mechanism for informing everybody of their entitlement to a health check. There is a need for clarity regarding where responsibility for this lies.


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4.1.2 Invitations and appointments

People are invited for appointments in a number of different ways. There might be value in finding out the pros and cons of different ways in terms of their impact on uptake. If any one system were found to be more successful,there could be a case for greater standardisation of the invitation process. Invitation letters are not helpful for non-readers. There seemed to be a preference for invitations to be by telephone call from the surgery.

As stated in the methodology, the data used to compile this report have been collected exclusively from people with learning disabilities themselves. People’s support workers were careful not to express their views and those views which were expressed have not been reflected here. However, one support worker comment might be pertinent to this section. It related to the fact that some people with learning disabilities might slip through the health check net by virtue of not being on the local authority learning disability register. By way of illustration the supporter relayed a case where an individual’s request for a health check was refused on the grounds that the GP disputed the patient’s learning disability ‘status’. It was suggested that involvement of health liaison nurses in the invitation process might help to ensure that the right people are offered health checks.

There was considerable demand for good information on what health checks are about and what to expect during the check. Uncertainty about what would happen seemed to cause many people anxiety. There was a suggestion that CDs or DVDs could play a role in this. People in some areas were issued with a book referred to as ‘my health book’. This included health promotion information and personalised information to be completed by the GP following each visit. These resources served as aide-memoires and as communication tools between GPs, the person themselves and carers. They were very popular amongst those who had used them and were valued highly. A number of examples exist within and beyond Wales. Flexibility in appointment times was highly valued and should, as far as possible, apply universally to health check appointments. In a similar vein, it seems to be particularly important for people with learning disabilities to be able to have the health check done by a doctor with whom they are familiar.

People were positive about GP communication skills. However, there appeared to be room for improvement in GPs’ understanding of current values concerning people with learning disabilities. In this respect, guidance should be provided to GPs on current principles around social interaction with people with learning disabilities. One local People First group had been involved in training GPs, receptionists and nurses in how to interact appropriately with people with learning disabilities. They had received some funding for this and other group members thought this was a good idea.


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4.1.3 Accessible advice

One aspect of the health check process is for doctors to advise patients on healthy living. This advice needs to be imparted in an accessible and memorable way. In addition, a wider range of health issues could be covered in GPs’ advice. It seems that there are already a range of sources of advice on healthy eating and exercise for people with learning disabilities:

“We talk about healthy eating in our house”; “I go to a class - we talk about it at cookery class”; “We have meetings at the leisure centre, had a ‘health day’ with guest speakers”

4.1.4 Process

In general, there were few complaints about the way the health check was carried out. However, one area which could be improved is the reduction of anxiety associated with the more invasive procedures such as taking blood and cervical screening. With respect to the latter, some models of best practice were referred to in the discussions. The main emphasis here seemed to be providing information effectively. These models could be explored further.

4.1.5 Post health check

It seems that there is a need for GPs to be clearer about the fact that health checks are repeated annually and what the mechanism for arranging ‘follow-up’ health checks is. Participants expressed a wish to be kept informed at all stages – including the results of the health check. Where referrals to other health professionals arise from the health check, the reasons for these referrals should be made clear to patients. Similarly, the professional to whom the person is referred should receive all relevant information about the person in advance of the consultation.

4.2 The PEARL education pack

Baxter et al. (2006) conducted a study to assess the impact of a structured health check for adults with learning disabilities undertaken in primary care interms of the identification of previously unidentified morbidity. The Primary Care, Evaluation, Audit and Research in Learning Disabilities (PEARL) project was funded by the Henry Smith Charity and was conducted in collaboration with about 40 general practices across Wales. Following the study a health check education pack was produced as a resource for GPs (Kerr et al., 2006).Some of the topics covered in it are summarised below. The pack needs to be updated to reflect new evidence and policy changes (e.g., the Mental Capacity Act(HMSO, 2005)), and it would seem important for the revised pack to be made available to GPs in order to help standardise the quality of the health check process.


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4.3 Role of family/carers

The person with learning disabilities is the patient and when possible communication should be with them. However, it is also important to collect, document and use the knowledge of others who are involved in that person’s care. Family and carers have valuable information about the patient because they are involved in the person’s day to day life, they have a lifetime of knowledge and expertise about his or her personality, interests, likes /dislikes and needs. Moreover, they may often be responsible for the administration of medication/procedures. They can act as a ‘support’ person for medical appointments or liaise between various agencies providing services, they can provide links with other professionals and specialist teams and they will probably have a positive impact on the quality of care because of their involvement and personal interest over the long term.

Family and carers might also help to access appropriate services, support communication between the GP and the patient and advise on challenging behaviour.

4.4 Role of GPs

Communication

Communication between the GP and both the patient with learning disabilities and their family or carers is pivotal. Best practice in relation to communication includes focusing on the individual, assessing what information the person needs, modifying the information to suit individual needs, explanation (including demonstration), evaluation of how well the information has been conveyed, and, if necessary, repetition. To help the person with learning disabilities express themselves the GP will need to know how advanced the individual’s language is and how they communicate (e.g., through an interpreter, or using augmentative and alternative communication techniques). Development of reflective listening skills will also help.

Information

Although the purpose of health checks should have been explained to the patient before the visit to the doctor, further explanation will be needed at the health check itself. The GP should explain what will happen and why, what the expected outcome might be and what treatment or follow up might be made. The GP should also answer any questions the person may have regarding their care and discuss with the person and the carer if applicable, the actual outcomes of the assessment.

The time taken to assess the individual’s health care needs will depend on their disability and their current health status. If a new procedure or test is to be performed, the person may require additional information, education and


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support. For example a CAT scan may well involve more than one appointment for preparation.

If relevant personal and or health records are available, these should be brought to each consultation or appointment. Carers may need to be reminded to forward the person’s health file with them when they visit for a health check. This file should also be updated and outline any information that is relevant to treatment, change in medication etc. that may affect the person’s care.

Consent

Many people with learning disabilities are able to make informed choices about their care and they should always and whenever possible be a part of the decision making process. When informed consent is to be obtained while providing health care to people with learning disabilities, it is important to assess their capacity to act on their own behalf. The Mental Capacity Act (HMSO, 2005) and its associated guidance suggest how capacity should be judged. Where an individual’s capacity to make a specific decision is in doubt, the Mental Capacity Act requires the undertaking of a functional test. The functional test of whether a person can give informed consent is that: (i) they can understand the information given to them; (ii) they can retain the information long enough to be able to make the decision; (iii) that they can weigh up the information available to make the decision; (iv) that they can convey their decision, even if it is in a most basic way.

The Mental Capacity Act allows for decisions to be made and actions taken on behalf of individuals who lack capacity if it is deemed to be in their best interests. Ideally, this judgement should be based on information from people like relatives and friends (as personal consultees). If this is not possible, then other people (e.g., care staff or an individual’s GP) can be consulted (as nominated consultees).

Health Promotion and Education

The individual needs of each person will determine how and what type of information they will receive. In addition to the health promotion materials for people with learning disabilities from the Public Health Wales Toolkit there are a growing number of resources that have been specifically designed for this population e.g.,

• Group sessions run in employment, educational and recreational settings • Booklets and pamphlets specifically developed at an appropriate level for

people with a learning disability • Modelling procedures to provide a visual understanding of the concepts

(this is where extra time may be required)• Training staff to provide information to the individual• Using specialist staff to provide appropriate education.


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The Health check process

Division of the health check into sections and the undertaking of some of these sections in advance (e.g., systems enquiry) should be considered. Some components may be undertaken by others (e.g., practicenurses).Accurate record keeping using an electronic template and appropriate management and ongoing review of identified health deficiencies is important, and should be put in place to ensure effective follow-up.

Nutrition

Development of networks which cross organisational boundaries is needed to support people with nutrition/dysphagia disorders

Epilepsy

Knowledge of the causes and classification of epilepsy, good history taking and proper physical examinations are needed to select appropriate medication/treatment. Accurate monitoring of medication side effects is also needed

Challenging behaviour

A full functional analysis will not be possible during the health check. However, it may be useful to consider medical or physical conditions which might influence behaviour, and to take appropriate remedial action and monitor subsequent behaviour.

Autism

Awareness of the triad of impairments characteristic of autistic spectrum disorder might help clinicians understand patients with autism better and to refer patients of uncertain status for specialist diagnosis. When arranging appointments and carrying out consultations practice staff and clinicians should bear in mind that people with autism tend not to like changes inroutine, might be hypersensitive to noise and/or crowds, might have altered sensitivity to pain, and are likely to struggle with communication – especially non-literal communications.

Sensory impairment

Detection of sensory impairment in pre-school and school age children should primarily be the responsibility of child health services. Self report of sensory impairment is uncommon and may just be accepted by the person with learning disabilities or expressed as inactivity, irritability, refusal to walk, or self-injury. GPs should be more active in detecting age-related sensory loss and ensuring children and young adults have been screened. Annual


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otoscopies and checks of proper use of glasses and hearing aids are recommended. Uncooperative people should be referred for screening which uses specialist techniques.

The PEARL education pack provides more detail on all of the above. It also stresses the need to monitor anti-psychotic medication, to maintain confidentiality, to manage risk effectively and to maintain standards that are at least as high as those for the general population. Throughout the pack, the importance of appropriate referral to and collaboration with multidisciplinary/ multi-agency teams and their constituent learning disability specialists is stressed.

5. Audit + Software

A focus of the project has been to develop the data systems that could be capable of providing a more sophisticated analysis of the quality of health checks and the health status of adults with learning disabilities in Wales. This has involved two initiatives undertaken by the relevant government departments: (a) creation and dissemination of the necessary software so that GPs could record the results of the health check electronically, and (b) development of a learning disability module of Audit+. The latter development was facilitated by additional funding from the Welsh Assembly Government. The function of Audit + is to support practices in data collection and quality improvement and it will allow the extraction of anonymous, aggregate, electronically-held data from GP clinical information systems. The focus of the learning disability module is to extract data on the health status of people with learning disabilities and the health processes they experience within a primary care context, including data derived from the learning disability health check.

The newly updated learning disability module in Audit +is provided free of charge and is compatible with about 95% of Welsh GP clinical information systems. In order to raise awareness, every practice manager was e-mailed about its availability and the rationale behind it. E-mails were also sent to the primary care leads in the new Local Health Boards informing them of progress and pointing out the need for training opportunities to encourage full use of the module and explaining how it can reinforce the Direct Enhanced Service for Learning Disabilities.

A test down load of LD health check data from across Wales using the LD module of Audit+ software has proved successful with provisional data comparing well with the known incidences of certain conditions such as epilepsy. It also provides useful information around prescribing data and recorded BMIs. Immediate activities will focus on appraising and refining data quality prior to an initial comprehensive analysis which we aim to provide in about six month’s time.

An application to progress the regular downloads of anonymous data to Public Health Wales will be made to the April Clinical Governance Committee


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of Primary Care Quality Information Service. This data will be shared with the Public Health Wales and Welsh Centre for Learning Disabilities steering group for analysis.

(The initial test download was delayed until February 2010 because the team developing the Audit+ learning disabilities searches had to switch focus todeveloping monitoring searches for Swine Flu vaccination rates).

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