NHS Ayrshire & Arran. Local Report ~ July Healthcare Services for People with Learning Disabilities

Transcription

1 NHS Ayrshire & Arran Local Report ~ July 2009 Healthcare Services for People with Learning Disabilities

2

3 kep^óêëüáêéc^êê~å içå~äoééçêíúgìäóommv eé~äíüå~êépéêîáåéëñçêméçéäé ïáíüié~êåáåöaáë~äáäáíáéë

4 içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv O kepnì~äáíófãéêçîéãéåípåçíä~åçekepnfpfáëåçããáííéçíçéèì~äáíó~åççáîéêëáíók téü~îé~ëëéëëéçíüéééêñçêã~ååé~ëëéëëãéåíñìååíáçåñçêäáâéäóáãé~åíçåíüéëáñ Éèì~äáíóÖêçìéëÇÉÑáåÉÇÄó~ÖÉIÇáë~ÄáäáíóIÖÉåÇÉêIê~ÅÉIêÉäáÖáçåLÄÉäáÉÑ~åÇëÉñì~ä çêáéåí~íáçåkcçêíüáëéèì~äáíó~åççáîéêëáíóáãé~åí~ëëéëëãéåíiéäé~ëéëééçìêïéäëáíé EïïïKåÜëÜÉ~äíÜèì~äáíóKçêÖFKqÜÉÑìääêÉéçêíáåÉäÉÅíêçåáÅçêé~éÉêÑçêãáë~î~áä~ÄäÉçå êéèìéëíñêçãíüékepnfpbèì~äáíó~åçaáîéêëáíólññáåéêk «kepnì~äáíófãéêçîéãéåípåçíä~åçommv fp_knjuqqmqjrnqjr cáêëíéìääáëüéçgìäóommv vçìå~ååçéóçêêééêççìåéíüéáåñçêã~íáçåáåíüáëççåìãéåíñçêìëéïáíüáåkeppåçíä~åç ~åçñçêéçìå~íáçå~äéìêéçëéëkvçìãìëíåçíã~âé~éêçñáíìëáåöáåñçêã~íáçåáåíüáë ÇçÅìãÉåíK`çããÉêÅá~äçêÖ~åáë~íáçåëãìëíÖÉíçìêïêáííÉåéÉêãáëëáçåÄÉÑçêÉ êééêççìåáåöíüáëççåìãéåík fåñçêã~íáçååçåí~áåéçáåíüáëêééçêíü~ëäééåëìééäáéçäókepäç~êçëlkep çêö~åáë~íáçåëiçêí~âéåñêçãåìêêéåíkepäç~êçlkepçêö~åáë~íáçåëçìêåéëiìåäéëë çíüéêïáëéëí~íéçi~åçáëäéäáéîéçíçäéêéäá~ääéçåéìääáå~íáçåk ïïïkåüëüé~äíüèì~äáíókçêö

5 `çåíéåíë N b~ëóêé~çëìãã~êóçñçìêñáåçáåöë Q O péííáåöíüéëåéåé U P pìãã~êóçññáåçáåöë NM Q aéí~áäéçñáåçáåöë~ö~áåëííüéèì~äáíóáåçáå~íçêë NO ^éééåçáñnódäçëë~êóçñ~ääêéîá~íáçåë ^éééåçáñoóoéîáéïéêçåéëë ^éééåçáñpóaéí~áäëçñêéîáéïîáëáí PQ PR PS içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv P

6 N b~ëóêé~çëìãã~êóçñçìêñáåçáåöë About this summary This summary is written for people with learning disabilities, their supporters and family carers. It tells you how well NHS Ayrshire & Arran is meeting the health needs of children and adults with learning disabilities. What is NHS Quality Improvement Scotland? NHS Quality Improvement Scotland (NHS QIS) was set up in January It is our job to help improve the health services that people in Scotland get. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv Q

7 How do we find out what NHS Ayrshire & Arran is doing? NHS QIS has produced quality checks, which show if a health service is doing its job properly. The quality checks were used by staff in NHS Ayrshire & Arran to find out how well the service is working. This is called a self-assessment. Then a team from NHS QIS visited NHS Ayrshire & Arran and looked at this self-assessment. The NHS QIS team met with staff to find out more about the service. This summary was written after the NHS QIS visit. It tells you how well NHS Ayrshire & Arran is doing and what it needs to do to improve. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv R

8 Some information on NHS Ayrshire & Arran Ayrshire and Arran is in the south-west of Scotland and about 367,000 people live there. Ayr and Kilmarnock are the biggest areas, although lots of people live in the countryside. How is NHS Ayrshire & Arran doing? Helping people to be included in their care, and making sure they are healthy Good things There is training for staff about disability awareness. There is also a Disability Equality Scheme which includes the needs of people with learning disabilities. In NHS Ayrshire & Arran, there is a sexual health nurse who works with people with learning disabilities. Booklets with photos have been printed to show people what they can expect when they go to their hospital or GP appointment. Things that need to be improved There could be more easy read information about transport services. Parking can be difficult at many of the hospitals in Ayrshire. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv S

9 Making sure people s healthcare needs are met Good things There are good training courses for staff in NHS Ayrshire & Arran about adult support and protection and legal issues. There are three learning disability liaison nurses. There is also a person in most doctors surgeries who links with the community learning disability teams. Home visits can be arranged if people cannot get to hospital or their doctors surgery. A group is in place to look at many issues including safety for vulnerable people who are in hospital. Things that need to be improved Sharing information between council and health services is an area that could be improved in NHS Ayrshire & Arran. At the time of the visit, there was no service user group for wheelchair and seating services. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv T

10 O péííáåöíüéëåéåé NHS Quality Improvement Scotland (NHS QIS) was set up by the Scottish Parliament in 2003 to take the lead in improving the quality of care and treatment delivered by NHSScotland. NHS QIS does this by setting standards and monitoring performance, and by providing NHSScotland with advice, guidance and support on effective clinical practice and service improvements. The revised Quality Indicators for Learning Disabilities were published in February 2004 and have since been used to assess the quality of health services available to children and adults with learning disabilities in Scotland. The learning disability review carried out in looked at the provision of community-based services for children and adults with complex needs, and progress with learning disability hospital closure. In response to the findings of the Roddy Donnet Fatal Accident Inquiry, the Scottish Government Health Directorates announced that learning disability services should be reviewed in line with the NHS QIS Learning Disabilities Best Practice Statement and Quality Indicators 2 and 3 from the revised Quality Indicators for Learning Disabilities. A multidisciplinary and multi-agency project group was appointed in April 2008 to integrate the themes from the two documents and develop a self assessment. ^ÄçìííÜáëêÉéçêí This report presents the findings from the peer review of NHS Ayrshire & Arran s performance against Quality Indicators 2 and 3. The review process has three key phases: preparation prior to the visit; the visit; and the report production and publication following the visit. (See flow chart in Appendix 2 for further detail.) During the visit, each multidisciplinary review team assesses performance using the categories as detailed below. Comprehensively developed applies where the evidence demonstrates the systems are in place to ensure that, wherever possible, the needs of the people with learning disabilities are fully satisfied. Procedures and arrangements are based on sound, integrated approaches, deployed in all relevant areas. Robust strategies are in place, together with systems to monitor the impact of these on the quality of services provided. There is an active assessment review, seeking opportunities for further development. Substantially developed applies where the evidence demonstrates the systems in place enable most of the needs of people with learning disabilities to be satisfied. Procedures and arrangements in place are deployed in the majority of areas. Strategies are in place, together with some impact assessment systems. There is some assessment and review activity identifying scope for improvement. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv U

11 Quality indicator statements graded either comprehensively developed or substantially developed are viewed by the review teams as having met the standard required. Partially developed applies where the evidence demonstrates the systems in place enable some of the needs of people with learning disabilities to be partially satisfied. Limited procedures and arrangements are deployed in some areas. Fragmented strategies are in place. Little assessment or review activity is being carried out, with a limited agenda for improvement. Scarcely developed applies where the evidence demonstrates the systems in place are insufficient to address the needs of people with learning disabilities. Inadequate procedures and arrangements are scarcely implemented. There is little or no progress in developing relevant strategies. Very little assessment or review is carried out. Quality indicator statements graded either partially developed or scarcely developed are viewed by the review teams as having not met the standard required. A no formal grading category is used when the nature of the service provided by the NHS board being reviewed makes it inappropriate to formally assess this Quality Indicator statement. A final category not applicable is used where a quality indicator and/or criterion does not apply to the NHS board under review. Each review team is led by an experienced reviewer, who is responsible for guiding the team and ensuring that team members are in agreement about the assessment reached. Membership of the review team visiting NHS Ayrshire & Arran on March 2009 can be found in Appendix 3. Each NHS board should ensure that the issues highlighted by this report are reported to their clinical governance committee and addressed by their clinical governance and risk management unit. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv V

12 P pìãã~êóçññáåçáåöë PKN lîéêîáéïçñäçå~äëéêîáåééêçîáëáçå Ayrshire and Arran is situated in south-west Scotland and has a population of around 367, The majority of the population live in urban areas, of which Ayr and Kilmarnock are the largest in the region, although a significant proportion live in rural areas. içå~äkepëóëíéã~åçëéêîáåéë Ayrshire & Arran NHS Board is responsible for improving the health of the local population and for the delivery of the healthcare required. It provides strategic leadership and has responsibility for the efficient, effective and accountable performance of the NHS in Ayrshire & Arran. Further information about the local NHS system can be accessed via the website of NHS Ayrshire & Arran ( At the time of the review visit, NHS Ayrshire & Arran had identified approximately 1,860 adults with a learning disability and 498 children. The two main hospitals are: Ayr Hospital Crosshouse Hospital, Kilmarnock. There are also 59 GP practices throughout the NHS board area. Three community learning disability teams are in operation in NHS Ayrshire & Arran for adults with learning disabilities. Services for children with learning disabilities are provided as part of the generic services to children aged 0 16 years. 1 General Register Office for Scotland. Mid-2007 Population Estimates Scotland. Table 3 - Estimated population by sex, five year age group and administrative area: 30 June First published on 24 July Available from: içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NM

13 PKO pìãã~êóçññáåçáåöë~ö~áåëííüéèì~äáíóáåçáå~íçêë A summary of the findings from the review is illustrated in this section. The most appropriate assessment category is agreed by the review team to describe the NHS board s overall performance against each quality indicator statement indicated by the shaded areas below. A detailed description of performance against Quality Indicators 2 and 3 is included in Section 4. nì~äáíófåçáå~íçêoómêçãçíáåöfååäìëáçå~åçtéäääéáåö ^ëëéëëãéåí Å~íÉÖçêó nì~äáíó áåçáå~íçê ëí~íéãéåí `çãéêéüéåëáîéäó ÇÉîÉäçéÉÇ jéí pìäëí~åíá~ääó ÇÉîÉäçéÉÇ m~êíá~ääó ÇÉîÉäçéÉÇ kçíãéí ^KN ^KO ^KP ^KQ på~êåéäó ÇÉîÉäçéÉÇ nì~äáíófåçáå~íçêpójééíáåödéåéê~äeé~äíüå~êékééçë ^ëëéëëãéåí Å~íÉÖçêó nì~äáíó áåçáå~íçê ëí~íéãéåí `çãéêéüéåëáîéäó ÇÉîÉäçéÉÇ jéí pìäëí~åíá~ääó ÇÉîÉäçéÉÇ m~êíá~ääó ÇÉîÉäçéÉÇ kçíãéí _KN _KO _KP _KQ _KR _KS _KT _KU _KV _KNM _KNN _KNO _KNP på~êåéäó ÇÉîÉäçéÉÇ içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NN

14 Q aéí~áäéçñáåçáåöë~ö~áåëííüéèì~äáíóáåçáå~íçêë nì~äáíófåçáå~íçêowmêçãçíáåöfååäìëáçå~åçtéäääéáåö ^KNnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí aáë~äáäáíó^ï~êéåéëëwpí~ññ~êéñ~ãáäá~êïáíüíüéaáë~äáäáíóaáëåêáãáå~íáçå^åíenvvrf Eaa^FÖìáÇÉäáåÉë~åÇäÉÖáëä~íáçå~ëáí~ééäáÉëíçÅÜáäÇêÉå~åÇ~ÇìäíëïáíÜäÉ~êåáåÖ Çáë~ÄáäáíáÉëK dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí The review team found that all staff within NHS Ayrshire & Arran have been made aware of the publication of the Disability Equality Scheme (DES) People with learning disabilities are specifically referred to within the DES and disability awareness training is available for staff throughout the service. This training was being reviewed at the time of the visit, and it was anticipated that there would be a module available on disability awareness through e-learning. Staff reported that disability tip cards have been distributed to frontline staff and there are plans in place to widen this distribution over the forthcoming year. At the time of the review visit, staff were considering conducting a review of the impact that the disability tip cards have made. Compliance with the DES was reported to be audited through the complaints and comments system, annual reports and the 3-year action plan. NHS Ayrshire & Arran reported that people with learning disabilities had been involved throughout the development of the DES. The review team noted that prior to the publication of this document, service users and community groups had also been part of the consultation process. A consultation questionnaire had been prepared and circulated to the relevant groups, including people with learning disabilities. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NO

15 nì~äáíófåçáå~íçêowmêçãçíáåöfååäìëáçå~åçtéäääéáåö ^KOnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí aáë~äáäáíó^ï~êéåéëëw`üáäçêéå~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéë~åçíüéáêñ~ãáäó Å~êÉêëÅ~å~ÅÅÉëëÜÉ~äíÜëÉêîáÅÉëÉííáåÖëK dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí Each of the three community learning disability teams within NHS Ayrshire & Arran have an identified nurse to liaise with local primary care services. This allows the identification of staff training needs and encourages an appropriate response to the needs of people with learning disabilities. The needs of children with learning disabilities are addressed by community nursing services such as health visitors, district nurses and school nurses. Projects that have taken place within NHS Ayrshire & Arran have supported children and adults with learning disabilities and their carers to access health service settings. The Bridge to Vision Project has created a pool of community optometrists across the NHS board area with specific skills in relation to working with people with learning disabilities. Work is also ongoing to ensure that specific needs are met in acute settings as well as within the community. This includes people being offered double appointments and also appointments at the beginning of clinics, both designed to minimise stress. The Keep Well Project is a national project aimed at reducing chronic heart disease. This project has been adapted within NHS Ayrshire & Arran so that it is not limited by postcode for people with learning disabilities who are aged between Learning disability staff have been working alongside the project team to ensure that people with learning disabilities have accessible information about the project, and that the staff delivering the project have undertaken appropriate training. Environmental adaptations for children and adults with multiple disabilities follow the requirements within the Disability Discrimination Act (1995) (DDA). An accessible information group was set up in 2008, which provides a focus for development work that may be required within local health services. At the time of the review visit, the accessible information group had a remit for the learning disability service only. GP surgeries were reported to have received visits from the Royal National Institute for the Blind to suggest appropriate environmental adaptations. Booklets containing photos have also been developed to help guide service users to their appointments. Staff reported that there has been very positive feedback from service users and carers with regard to these booklets, and a revision of these materials was under way at the time of the review visit. In addition, pre-admission visits are encouraged whenever possible, particularly within day surgery. An easy read leaflet about the community learning disability teams has been developed and was reported to be available throughout mainstream healthcare içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NP

16 settings. The review team noted that all materials produced within NHS Ayrshire & Arran are required to have a review date. There is a fast-track system in place to facilitate access to accident and emergency departments for people with learning disabilities. Within the accident and emergency department at Crosshouse Hospital, there is a dedicated, staffed paediatric area which is open from 9am 9pm. At the time of the review visit, an evaluation of this service was being carried out with a view to providing a 24-hour paediatric service. Ayr Hospital has a paediatric unit within accident and emergency which is open all hours. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NQ

17 nì~äáíófåçáå~íçêowmêçãçíáåöfååäìëáçå~åçtéäääéáåö ^KPnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí qê~åëéçêíwqüéåééçëçñåüáäçêéå~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéë~êéåçåëáçéêéçáå êéä~íáçåíçé~íáéåííê~åëéçêí~åçöéåéê~äíê~åëéçêíëéêîáåéëk dê~çáåöwm~êíá~ääóçéîéäçééçókçíãéí An overarching Scottish Ambulance Service and NHS Ayrshire & Arran transport liaison group considers the needs of all patients, including children and adults with learning disabilities. Membership of this multidisciplinary group includes wide representation from NHS board staff, as well as a member of the public. However it was not clear how the views of people with learning disabilities or their carers would be included in this group. The Scottish Ambulance Service confirmed that a range of vehicles are available within the NHS board area. However, the review team highlighted a need for easy read literature about transport options for people with learning disabilities and their carers. The review team noted the appointment of a dedicated NHS transport and access co-ordinator who provides information and guidance across the NHS board area. Additionally, a transport and access action plan ( ) has been produced. In terms of general improvements for all patients, an hourly bus service has been introduced in recent years between Ayr Hospital and Crosshouse Hospital. Buses on this service have drop-down entrances for easier wheelchair access. However, evidence presented to the review team did not demonstrate that the specific needs of people with learning disabilities had been taken into account. The review team was informed that parking facilities are provided at every healthcare facility within the NHS board area and, at all of these sites, there are dedicated parking bays for people with physical disabilities which are clearly marked. Designated drop-off points are identified at all general and community hospitals. At the accident and emergency department within Ayr Hospital, one space has a call button for assistance. Evidence was provided which showed that in 2008, NHS Ayrshire & Arran had received a number of complaints about access to disabled parking at general hospital sites, such as the abuse of spaces allocated to blue badge holders. To address this matter, barrier-controlled parking areas exclusively for blue badge holders have been introduced at Crosshouse Hospital, and similar arrangements are proposed for Ayr Hospital. Other complaints regarding the drop-off point at Crosshouse Hospital are being addressed in plans to alter vehicular access to the main entrance of the hospital. Additional spaces have also been provided at Arrol Park Resource Centre, Ayr. Parking is closely monitored to discourage abuse of disabled spaces. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NR

18 nì~äáíófåçáå~íçêowmêçãçíáåöfååäìëáçå~åçtéäääéáåö ^KQnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí eé~äíümêçãçíáçå~åçeé~äíüfãéêçîéãéåíwqüékepäç~êçlåçããìåáíóüé~äíü é~êíåéêëüáée`emfü~ë~å~öêééçéçäáåóçåüé~äíüáãéêçîéãéåí~åçïéäääéáåö ~ÅíáîáíáÉëIïÜáÅÜí~âÉë~ÅÅçìåíçÑíÜÉÇáîÉêëÉÖÉåÉê~ä~åÇÅçãéäÉñåÉÉÇëçÑÅÜáäÇêÉå ~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéëi~åç~ççêéëëéëüé~äíüáåéèì~äáíáéëk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí NHS Ayrshire & Arran has developed a draft health improvement strategy in conjunction with the learning disability service. A wide range of stakeholders have been involved in the development of this strategy, including carers and established service user groups. Feedback from each of these groups was incorporated into the strategy where appropriate. An easy read version of the strategy was produced at the end of the consultation process. A working group has been established to consider the changes that have been suggested, and it was reported that the finalised strategy is due to be presented to the Board in May Staff informed the review team that the learning disability service uses health promotion materials on a regular basis. These materials include a breast screening DVD which is used specifically for people with learning disabilities. Feedback has been received on the DVD, which has formed the basis of an audit. A programme of health literacy training, designed to help staff recognise how service users understand information, was initially piloted in This has since been rolled out for all staff across all services. The learning disability service has part-funded a sexual health nurse post for people with learning disabilities; the nurse is also part of the wider sexual health team. The sexual health nurse works with children with learning disabilities in transition from school to adulthood and identifies gaps in current service provision. The nurse works alongside school nurses and can provide one-to-one sessions or group work. The review team noted that there is also an area wide sexual health advisory group. The review team heard of future plans for joint working and meetings with service user and carer groups in order to identify and raise the profile of those issues that are not adequately covered under existing service provision. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NS

19 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KNnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí ^ëëéëëãéåí~åç`~êémä~ååáåöw`üáäçêéå~åç~çìäíë~åçäé~êåáåöçáë~äáäáíáéë~ååéëëáåö ÜÉ~äíÜëÉêîáÅÉëÜ~îÉ~åìéJíçJÇ~íÉãìäíáÇáëÅáéäáå~êóÅ~êÉéä~åK^ëëÉëëãÉåíçÑÜÉ~äíÜ~åÇ Å~é~ÅáíóçÑÑ~ãáäóÅ~êÉêëáëÅçåëáÇÉêÉÇI~åÇäáåâÉÇíç~ëëÉëëãÉåíçÑìëÉêëÛåÉÉÇKeÉ~äíÜ ëéêîáåéëëìééçêíééçéäéïáíüäé~êåáåöçáë~äáäáíáéëíçìëéçáêéåíé~óãéåíëk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí At the time of the review visit, the single shared assessment (SSA) was being rolled out across adult services. However, the SSA has been in use in East Ayrshire for a number of years. In the majority of cases, an SSA is generally initiated by social work staff when an individual is first referred. At the time of the review, evidence presented to the review team indicated that during a 6-month period, 33% of referrals to the community learning disability teams were accompanied by an SSA. An SSA can also be initiated by members of health staff who have care management responsibilities, if one does not exist. Arrangements for electronic recording and sharing of the SSA vary across NHS Ayrshire & Arran as different electronic systems are in place across the three local authority areas. At the time of the review visit, evidence indicated that 6% of those registered on the Functional Analysis of Care Environments (FACE) clinical information system had an SSA recorded on the system, only those SSAs completed by health staff are recorded on the FACE system. Within children s services, an integrated assessment is carried out by health services and local authorities as part of the Getting It Right For Every Child approach. This is an initial single multi-agency assessment, which is gradually being rolled out. At the time of the review, the assessment was recorded and disseminated on paper as FACE was not universally rolled out in children s services. The review team encouraged a more rapid roll-out of the integrated assessment for children with learning disabilities. The co-location of some health and social work teams in East and South Ayrshire has greatly supported joint working and information sharing on needs assessment and care management. In children s services, there is regular daily contact at Rainbow House, Ayrshire Central Hospital, Irvine, between staff and social work, for example during involvement in reviews. Health and social work staff involved in assessments and care planning have adopted the use of the same wellbeing indicators: safe, healthy, achieving, nurtured, active, respected, responsible and included. The review team was informed of facilities for respite care within the NHS board area and noted that a detailed assessment of respite care needs is ongoing for children. Staff indicated that the uptake of direct payments has been limited, but is gradually improving. Direct payments are considered as an option when discussing multi- içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NT

20 agency respite and transition planning. The Ayrshire Independent Living Network is able to provide payroll services for direct payments. Following the scrutiny of FACE data, guidance has been issued to staff about how to record information about an individual s Adults with Incapacity (Scotland) Act (2000) (AWIA) status on the FACE system and the importance of maintaining up-todate and comprehensive records. Liaison nurses are leading in the development of learning disability registers in GP practices. In addition, liaison nurses have also been involved in raising awareness of this legislation and developing competency and capacity within hospital services, for example training on AWIA legislation forms part of the junior hospital doctors training programme. Within learning disability services, clinical notes have been audited as part of the Mental Welfare Commission review. In addition, the FACE system has been audited to ensure that reviews are being carried out in accordance with AWIA. Following this audit, an action plan has been developed with the aim of improving compliance across community-based services. The review team was informed that every effort is made to accurately reflect client, carer and others views within documentation, including areas of disagreement. While there are three advocacy services in Ayrshire and Arran, the services vary between each local authority area. The review team commended the carer s self-assessment questionnaire, How are You, which is available as part of the FACE system. Carers assessments form part of the paperwork for both adults and children s assessments. Staff are aware of the need to improve the uptake of carers assessments. It is anticipated that this will be addressed as part of a carers strategy. The review team recognised the high uptake of the enhanced services in NHS Ayrshire & Arran where 58 out of 59 GP practices have agreed to provide the enhanced services for learning disabilities. Furthermore, 47 out of 59 GP practices have agreed to provide an enhanced service for carers. Arrangements are in place to identify communication needs and to record and share this information as appropriate. Information on the individual s preferred method of communication forms part of community nursing assessment plans, integrated assessment paperwork or health assessment documentation and this is shared with all those working with the individual. A comprehensive range of communication aids is available within the learning disability services. The service also has an accessible information group whose remit is to ensure that documents and letters produced by the NHS board are easily understood. The NHS board is expanding its existing range of accessible patient information material by developing easy read leaflets to explain common procedures carried out in the GP practice, such as measuring blood pressure, taking a blood sample, videofluoroscopy. If a person with learning disabilities needs to be admitted to an acute hospital, the lead speech and language therapist for the learning disability service is the main point of contact for disseminating information about the individual s communication içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NU

21 and/or food and fluid needs. The review team noted, however, that this arrangement does not apply for those admitted during the out-of-hours period. The review team was informed that personal health records have been used with a number of individuals known to the learning disability service since 2003 and to date, 183 of these have been issued. Staff acknowledged the need to promote the benefits of these more widely, whilst at the same time recognising the challenges of keeping these records up to date, especially for those people with complex needs. The review team was informed that a review of the content and implementation of personal health records is planned for The review team commended the use of the personal health records when clients are admitted to acute services, for example for day surgery, to facilitate planning and preparation. Communication passports are used by both children and adults, and multi-agency staff are encouraged to use them in delivering holistic care. The review team noted, for example, that communication passports are used by the school nurse in Daldorch House School, Catrine for children and young people with autistic spectrum disorders. Facilities to update passports are available in the speech and language therapy department, as well as in other sites. The review team welcomed and commended the proposal for a booklet entitled All about Me, which is being developed to hold more comprehensive health history. This booklet will be used in conjunction with communication passports. An abbreviated version of the All about Me booklet is used when children are admitted to hospital. This is kept on the children s ward for updating by parents, rather than filed in case notes. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv NV

22 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KOnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí bçìå~íáçå~äkééçëçñeé~äíüå~êépí~ññwqüéêéáë~åìéjíçjç~íéëíê~íéöóñçêçáë~äáäáíó ~ï~êéåéëë~åççáë~äáäáíóéèì~äáíóíê~áåáåöiïüáåüí~âéëáåíç~ååçìåííüéåééçë~åç êáöüíëçñåüáäçêéå~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéëiáååäìçáåöíüçëéïáíü~ëëçåá~íéç ~ìíáëíáåëééåíêìãçáëçêçéêe^pafçêãéåí~äüé~äíüéêçääéãëkqüáëáååäìçéë~ éêçöê~ããéçñéçìå~íáçå~åçíê~áåáåöñçêüé~äíüå~êééêçñéëëáçå~äëáåéêáã~êói ëéåçåç~êó~åçíéêíá~êóëéííáåöëk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí Within NHS Ayrshire & Arran, there is an identified person responsible for disability awareness and equality training. Staff informed the review team that this person also leads on the review of training needs within the organisation. Training needs were reported to be identified through the personal development process. The creation of a vulnerable adults group has helped to highlight areas where training needs to be developed. Induction for new staff includes a 5-day programme with statutory and mandatory training combined. Staff reported that consent training is provided at the induction stage and the AWIA is also introduced. Approximately 750 members of staff had participated in this training at the time of the review visit. The vulnerable adults group has noted that ongoing training for AWIA is an area for further development. Ongoing training is also in place addressing disability awareness, legislative requirements, and also adult support and protection. At the time of the review visit, NHS Ayrshire & Arran mental health services were in the process of developing a working group to address any outstanding training requirements, including learning disabilities. The review team noted that training sessions currently do not include specific information on the needs of carers of children and adults with learning disabilities or direct payment options. Disability training and general equality training was under review at the time of the visit, with a view to providing refresher training for all staff. Learning and understanding of training is assessed by delegates, who complete an evaluation form after each training session. All forms and comments are considered by the learning and development department. Specific training courses on AWIA and consent to treatment had been attended by 156 members of staff at the time of the review visit. The review team noted that while this training is not mandatory for all staff, all healthcare professionals whose work involves obtaining consent to treatment are required to attend. Work was also ongoing with the dean of education to look at the induction programme to ensure that medical staff are as up to date as possible with legislative requirements. Over 1,000 staff across NHS Ayrshire & Arran have attended the Mental Health (Care and Treatment) (Scotland) Act (2003) training, and at the time of the review içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OM

23 visit, some refresher training had been offered on a pilot basis and a working group established to analyse the outcomes. The review team noted that carers have given a presentation to clinicians and social work staff within the learning disability service. Service user and carer involvement in staff training is an area that NHS Ayrshire & Arran expressed interest in developing further. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv ON

24 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KPnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí mêáã~êó`~êé~åç`çããìåáíópéêîáåéëwqüéêéáë~å~ãéçëééåá~äáëíéê~åíáíáçåéêâåçïå íçé~åüéêáã~êóå~êéíé~ãñçêåüáäçêéå~åç~çìäíëk dê~çáåöw`çãéêéüéåëáîéäóçéîéäçééçójéí Each locality within NHS Ayrshire & Arran has a community learning disability team. Three liaison nurses were in place at the time of the visit. These nurses link primary and acute care services and conduct liaison meetings, integrated practice meetings and learning disability awareness training sessions to encourage joint working. Staff informed the review team that a link person is identified within each GP practice. In East Ayrshire, all fifteen GP practices have taken part in the learning disability awareness training which was delivered to a range of staff, including frontline workers. This training was being rolled out across the other local authorities at the time of the review visit. Staff informed the review team that the role of the liaison nurse allows more dialogue between the learning disability teams and GP practices where advice is required. In addition to this, the liaison nurses will follow up those patients who did not attend their GP appointment. Within South and East Ayrshire, steering groups have been set up to oversee work related to learning disabilities within primary care. The community learning disability team co-ordinator has a responsibility to ensure that resources are managed equitably and effectively. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OO

25 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KQnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí mêáã~êó`~êé~åç`çããìåáíópéêîáåéëwmêáã~êóå~êéëéêîáåéë~êéêéëéçåëáîéíçíüé åééçëçñåüáäçêéå~åç~çìäíëeáååäìçáåöçäçéêééçéäéfïáíüäé~êåáåöçáë~äáäáíáéë~åçíüéáê Ñ~ãáäóÅ~êÉêëáåëÅÜÉÇìäÉÇÅ~êÉ~åÇçìíJçÑJÜçìêëéÉêáçÇëK dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí The review team found that primary care services within NHS Ayrshire & Arran are responsive to the needs of children and adults with learning disabilities and their carers, both in scheduled and out-of-hours periods. In Ayrshire Central Hospital, there is a database which stores information about children with complex needs. The liaison nurses were also reported to be working towards identifying individual care support needs, which included close liaison with the transition nurses. It was noted that a survey completed by 29 of the 59 GP practices showed 42% have a register for children with learning disabilities. Every GP practice within NHS Ayrshire & Arran has a register for adults with learning disabilities. However, it was reported that these registers do not include the specific support needs of the individual. In order to address this gap, there is a link within the register to each patient record where details of individual requirements can be obtained. NHS Ayrshire & Arran uses the special notes system which is linked to NHS 24 for any episodes of out-of-hours care that may occur. Patient alerts are placed on this system on an individual basis and this includes patients with learning disabilities. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OP

26 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KRnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí mêáã~êó`~êé~åç`çããìåáíópéêîáåéëw`üáäçêéåióçìåöééçéäéi~çìäíë~åççäçéê ééçéäéïáíüäé~êåáåöçáë~äáäáíáéë~êéáååäìçéç~åçëìééçêíéçíçé~êíáåáé~íéáåëåêééåáåö éêçöê~ããéëk dê~çáåöw`çãéêéüéåëáîéäóçéîéäçééçójéí Within NHS Ayrshire & Arran, it was reported that it is the responsibility of the health visitor to identify any additional support needs when children with learning disabilities are participating in child health surveillance programmes. A specific group has been established to look at accessible information for children who have communication difficulties. It is anticipated that a range of leaflets will be available in the future. In the ward environment, a play specialist works with children to help to explain the procedures that they are about to under go. Participation in screening programmes is monitored through the uptake of the programmes and is recorded on national databases. The review team was informed that adults with learning disabilities have access to a range of information materials, a lot of which is either sourced from or directly provided by the NHS Ayrshire & Arran health information shop. This was reported to be underpinned by the work carried out by the primary care liaison nurse within each locality to enhance primary care staff knowledge around the awareness of learning disability issues. This includes the barriers faced by people with learning disabilities which may impede the uptake of screening programmes. Work has been carried out by the sexual health nurse for women with learning disabilities in relation to cervical smears, with a focus around uptake and accessible information. The review team noted that NHS Ayrshire & Arran has plans for a project to address the production and use of accessible information for adults with leaning disabilities. This project is due to start in May 2009 and it was anticipated that it would run for 9 months. Staff commented that there is an opportunity for the Keep Well Project to invite patients between the age bracket into routine screening and awareness programmes for chronic heart disease. It was also reported to the review team that the Keep Well Project is looking to expand its eligible age range for people with learning disabilities. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OQ

27 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KSnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí mêáã~êó`~êé~åç`çããìåáíópéêîáåéëwpééåáñáåüé~äíüåééçë~êé~ëëéëëéç~åç ãçåáíçêéçiìëáåöêéåçããéåç~íáçåëñêçãíüépåçííáëüeé~äíükééçë^ëëéëëãéåíñçê méçéäéïáíüié~êåáåöaáë~äáäáíáéëeommqf~åçíüépåçííáëübåü~ååéçpéêîáåéë mêçöê~ããéñçêié~êåáåöaáë~äáäáíóeommtóommufk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí Staff informed the review team that those children who are known to the community learning disability teams are supported by clinicians to access specialist healthcare services. Home visits and physical support is also available where required. There has also been input from the speech and language therapy department on a needs led basis. In each locality, it was also reported that there is a transition nurse in place who focuses on young people with complex needs. Close inter-agency working between the transition nurses and education colleagues, paediatric services and social work was reported to take place. Information regarding these individuals is captured on the FACE electronic patient record. Arrangements to monitor the support provided for adults with learning disabilities who attend specialist health services are recorded on FACE. This system allows the range of support that a patient within the learning disability service receives to be recorded and shared with other clinicians involved in patient care. The level of support received by a patient is also monitored by the patient s clinician, with regular supervision sessions. Support for older people with learning disabilities to attend specialist healthcare services is monitored through specific protocols. The liaison nurse for older people contributes to the vulnerable patient working group within the acute setting. As with adults, support for older people is also monitored at an individual clinician level through regular supervision sessions. It was felt by staff that the learning disability nurse liaison posts, the sexual health advisor post, the transition nurses in each locality and the learning disability awareness training for primary care staff are all areas of good practice that support the assessment and monitoring of the specific health needs for people with learning disabilities within NHS Ayrshire & Arran. The review team noted that 58 out of the 59 GP practices across all three localities within NHS Ayrshire & Arran have signed up to the enhanced service and, at the time of the review visit, were in the process of inviting more patients to attend health checks. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OR

28 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KTnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí mêáã~êó`~êé~åç`çããìåáíópéêîáåéëwqüéêéáë~å~öêééç~ééêç~åüíçàçáåíïçêâáåö ïáíüëçåá~äïçêâ~åççíüéê~öéååáéëáåäáåéïáíügçáåícìíìêéeommmfêéåçããéåç~íáçåëk dê~çáåöwm~êíá~ääóçéîéäçééçókçíãéí The review team noted that inter-agency information sharing is an area that could be developed further within NHS Ayrshire & Arran. Summary reports of health assessments are automatically sent to the relevant GP and minutes from multidisciplinary team meetings are also shared with the appropriate agencies. Within the acute setting, the FACE system is used to share information between departments in NHS Ayrshire & Arran and also out-of-hours. The review team was informed that an information sharing protocol has been developed. This protocol, which was ratified in March 2009, covers each local authority. It was reported that police and education services were in discussions to sign up to the protocol. However, the document was still very high level at the time of the review visit and there was work to be done around the detail of the protocol. Staff reported that there are good links between the community learning disability teams and specialist social work teams within each locality. Local area co-ordination was reported to be formally linked only to local authorities, however, informal links were in place between the local area co-ordinator and the learning disability service for the purpose of information sharing. Engagement of local co-ordinators can vary due to the differing methods of implementation within each locality. NHS Ayrshire & Arran equipment service store stock is independent of local authorities, although there have been attempts to establish an NHS board-wide equipment store. Equipment is issued to all patients including those supported by the learning disability service. The arrangements for response to equipment requests are the same for all patients. At the time of the review visit, there was no joint equipment store in place within NHS Ayrshire & Arran. North and east Ayrshire reported to have established their own arrangements while the NHS board and South Ayrshire Council were in the process of identifying a suitable location for a joint facility. East Ayrshire was reported to have their own equipment store from which they issue a range of aids and adaptations, including some jointly funded equipment. Staff informed the review team that some progress had been made, although no final decision had been made. Waiting times for access to equipment for patients with complex needs vary, depending on the amount of equipment required and how many people can deliver it. Each locality has its own arrangements and procedures for access and delivery. NHS Ayrshire & Arran works with each locality regarding the movement, maintenance and supply of jointly funded beds and hoists. Joint protocols for risk assessment for children and adults have agreed risk assessment documentation. It was noted by the review team that there is no formal process for joint critical incident reviews. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OS

29 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KUnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí eçëéáí~äpéêîáåéëwqüéêéáë~ëóëíéãáåéä~åéíçéåëìêéíü~íé~éçá~íêáå~åçöéåéê~ä Üçëéáí~äëÉêîáÅÉëÅ~åÖÉí~ÇîáÅÉ~åÇëìééçêíÑêçãëéÉÅá~äáëíëí~ÑÑáåäÉ~êåáåÖÇáë~ÄáäáíáÉëK dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí Access to advice and support from specialist staff in learning disabilities within acute and primary care was reported to be available through the liaison nurses in the community learning disability team. A resource pack for acute services staff has been available for some time. At the time of the review visit, resource packs were being updated for each ward area, to include contact information for accessing support, key aspects on learning disability and information on a number of support organisations. Staff reported that once the final version of the resource pack is complete, it will also be available on the intranet. NHS Ayrshire & Arran holds awareness sessions and displays information posters as additional mechanisms used to maximise the awareness of the learning disability advice and support that is available. Staff informed the review team that specialist advice is primarily available for people that are already known to the learning disability service. For patients that are unknown to the service, advice is generally accessed through the learning disability liaison nurse via the contact details provided to each ward. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OT

30 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KVnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí eçëéáí~äpéêîáåéëwdéåéê~äüçëéáí~äëéêîáåéë~åçëéêîáåéëéêçîáçéçäóé~éçá~íêáå Üçëéáí~äëLìåáíë~êÉ~ï~êÉI~åÇÖáîÉ~ííÉåíáçåíçIíÜÉåÉÉÇëçÑÅÜáäÇêÉå~åÇ~ÇìäíëïáíÜ äé~êåáåöçáë~äáäáíáéëi~åçãééííüéã~ééêçéêá~íéäók dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí The review team identified a number of robust examples of accessible services for people with learning disabilities. One example of this was the Bridge to Vision Project which has resulted in the ophthalmology department in Crosshouse and Ayr Hospitals giving patients with learning disabilities the first appointment of the day and a double slot appointment. There is also a direct referral system in place between the learning disability service and the audiology department. A further area of good practice was noted in relation to pre-admission assessment which has been made available to young people with complex needs within the day surgery unit at Crosshouse Hospital. Similarly, the endoscopy unit in Ayr Hospital has developed an easy-read pre-assessment letter and other relevant information materials. Patients are also given the opportunity to visit the unit prior to initial examination. The review team saw evidence that the accident and emergency department offers patients with complex needs a fast-track assessment and admission process. The review team found these services to be particularly flexible. It was noted by the review team that NHS Ayrshire & Arran provides a personcentred booking service for people with learning disabilities. A guide for outpatients has also been developed which the review team noted to be particularly useful for patients with learning disabilities. Alternative approaches to hospital appointments such as home visits, phone assessments and outreach clinics were available at the time of the visit. Staff informed the review team that 13.1% of all referrals to the Bridge to Vision Project received home visits. Arrangements to ensure that staff can access specialist advice within 4 normal working hours of a person with learning disabilities being admitted to a general hospital are addressed through the dissemination of contact details for the three primary and acute care liaison nurses in all clinical areas throughout each acute setting. In addition, the resource pack, which was in the process of being reevaluated, will provide extra support to staff in general wards. Individual communication needs are identified by staff through communication passports for adults or the All about Me book for children. Communication support is provided through interpreting services, communication between ward staff, accessible information booklets and sign language systems. All resources and documentation is passed through the vulnerable patient working group to assess the adjustments to standardised approaches to meet the needs of people with learning disabilities in the hospital setting. Access to specialist speech and language therapy advice was stated by the NHS board to be adequate. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OU

31 Staff informed the review team that discharge planning is an area requiring further development. Although multidisciplinary discharge planning meetings take place and consultation on care planning with carers is in place, this has been highlighted as an area to be included in training for acute hospital staff. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv OV

32 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KNMnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí m~ääá~íáîé`~êéwm~ääá~íáîéå~êéëéêîáåéë~êé~ääéíçí~âé~ååçìåíçñíüéåééçëçñåüáäçêéå ~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéëk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí The review team noted that there is a designated team within palliative care that treats children with life-threatening conditions. Care is usually provided between the acute and community care services; however, this is dependent on the condition of the child. Staff try, where possible, to give children and carers a choice about the kind of care that they receive. The review team noted that the palliative care service within NHS Ayrshire & Arran is able to take account of the needs of children and adults with learning disabilities. There are four palliative care consultants and a West of Scotland palliative care nurse which the NHS board make use of. Staff also reported that there are close links to GPs, multidisciplinary teams and social work services. In addition, as part of the learning disability awareness training, presentations have been given to hospice staff. This was largely facilitated by the close links within adult services between the community learning disability teams and hospice services. No specific training for palliative care specialists was reported to have taken place with regards to children with learning disabilities who require palliative care. Staff within adult services have received the disability awareness training and it is hoped that this training would be repeated at some point in the future. Alternative tools and approaches are available for people with learning disabilities, and these are used depending on the requirements of the individual. When assessing children, staff use an appropriate pain score depending on the child s age and cognitive ability. The DISDAT pain assessment tool is used for adults where appropriate. Staff informed the review team that the community learning disability teams are also considering the use of the DISDAT tool in their assessment processes. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PM

33 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KNNnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí péêîáåéëñçêläçéêméçéäéïáíüié~êåáåöaáë~äáäáíáéëwqüéêéáë~ééêçéêá~íéüé~äíü~åç ëçåá~äå~êéáåíéêîéåíáçåñçêçäçéêééçéäéïáíüäé~êåáåöçáë~äáäáíáéëk dê~çáåöwpìäëí~åíá~ääóçéîéäçééçójéí The review team commended the establishment of a vulnerable adults working group which aims to improve the effectiveness and safety of vulnerable adults receiving care in hospital. Joint working between learning disability services and older people s services is also facilitated by an older people liaison nurse, who is also a member of the vulnerable adults working group. When older people with learning disabilities require admission to acute care, the acute liaison nurse ensures good communication with ward and medical staff so that needs can be met appropriately. The liaison nurse is also involved in care planning. In general, older people with learning disabilities are cared for by generic as well as specialist learning disability services. Planned transitions from adult to older people s services typically take place for those aged 65 years and over in partnership with local authorities. This is underpinned by good communication at management level between the senior nurse for older people and the senior nurse for learning disability, who meet on a weekly basis. Following a comprehensive health assessment, care plans are tailored to take account of special needs and age-related concerns. An agreed protocol is followed for the use of cognitive enhancers. For those with more complex needs, transition to older people s services typically takes place when it is appropriate for the individual, rather than driven by age. For frail older clients with learning disabilities and complex needs, this may involve, for example, providing increasing levels of support in their existing unit, rather than transferring them to a new unit. The review team commended this practice. NHS Ayrshire & Arran recognises the growing numbers of people with learning disabilities who are living with older carers. Consideration is being given to the impact of this group on future service demands in terms of care planning and commissioning of services in South Ayrshire, although it was not clear whether this is taking place NHS board-wide. For older people with learning disabilities who do not have family or peer support in South Ayrshire, social services endeavour to provide initial support in the hospital at the start of their stay, for example at visiting times. Funding to support this practice is sourced from the joint protocol budget. The review team highlighted this good practice. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PN

34 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KNOnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí `äáåáå~ädìáçéäáåéë~åçdçîéêå~ååéw`äáåáå~äöìáçéäáåéëñçêëééåáñáåáääåéëëéë~êéñçääçïéç ~åçí~âé~ååçìåíçñíüéåééçëçñåüáäçêéå~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéëiéöpfdki kepnfpk dê~çáåöw`çãéêéüéåëáîéäóçéîéäçééçójéí The review team found that a clinical governance structure has been established around the learning disability service and mental health services. Members from these services attend regular meetings to update what stage they are at with the dissemination of specific guidelines relating to patients with learning disabilities within their service. It was noted by the review team that the clinical director for the learning disability service chairs a 6-weekly clinical governance steering group which looks at the implementation of local and national guidelines. In paediatrics, there is a dedicated clinical facilitator who informs the service of any new guidelines that have been released. The learning disability service has a clinical governance action plan which has five or six key priorities that populate the action plan. A template for a remedial action plan is also available. These definitive clinical governance structures have a link to the practice development unit. The review team was informed that the priorities in relation to clinical governance for the learning disability service include closing the loop on feedback, audit clinics and an anonymised incident bulletin. The review team saw evidence that audits have been carried out around guideline implementation as applied to people with learning disabilities. An audit of local guidelines in relation to the implementation of referral criteria for community learning disability teams, audit of record-keeping standards and an audit of access to dental services have all been carried out. It was noted by the review team that there is evidence within NHS Ayrshire & Arran that the clinical governance system allows consideration of the potential impact of a range of guidance on the care of people with learning disabilities in relation to general health needs. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PO

35 nì~äáíófåçáå~íçêpwjééíáåödéåéê~äeé~äíüå~êékééçë _KNPnì~äáíóáåÇáÅ~íçêëí~íÉãÉåí tüééäåü~áê~åçpé~íáåöpéêîáåéëwtüééäåü~áê~åçëé~íáåöëéêîáåéë~êééêçîáçéçïüáåü ãééííüéåééçëçñåüáäçêéå~åç~çìäíëïáíüäé~êåáåöçáë~äáäáíáéëk dê~çáåöwpå~êåéäóçéîéäçééçókçíãéí NHS Ayrshire & Arran is one of several NHS boards which contracts wheelchair and seating services from the West of Scotland Mobility and Rehabilitation Centre (WESTMARC). For the purposes of this review, much of the information given to the review team had been provided by WESTMARC. Regular fortnightly clinics are held at the Douglas Grant Rehabilitation Centre, Irvine, attended by a multidisciplinary staff including a paediatric physiotherapist and bio-engineers. At the time of the review, there was no local user group for wheelchair and seating services in the NHS board area. However proposals to develop local user groups form part of the Scottish Government s Wheelchair and Seating Service Modernisation Action Plan, March Additionally, WESTMARC has recently secured funding to establish a user involvement worker post to gather views across all client groups. Staff considered that, following a review 3 years ago, the staff skill mix within WESTMARC had improved. There is no systematic approach to reassessment within wheelchair and seating services. Only those who receive physiotherapy treatment are regularly reviewed. Otherwise reviews are initiated by individuals, carers, parents or other health professionals. There are issues particularly relating to delays for review for those with specialist wheelchairs. Staff also expressed concern that they did not receive feedback from WESTMARC following referrals. While NHS Ayrshire & Arran is aware of the level of dissatisfaction with the service provided by WESTMARC, the review team encouraged the NHS board to take a more proactive approach towards monitoring the contract with WESTMARC to ensure compliance with targets. In addition, a mechanism should be put in place to gather and address the views of local service users and carers with learning disabilities. Finally, the review team encouraged improved communication between NHS staff and WESTMARC following referrals. içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PP

36 ^éééåçáñnódäçëë~êóçñ~ääêéîá~íáçåë ^ÄÄêÉîá~íáçå ^tf^ ^ÇìäíëïáíÜfåÅ~é~ÅáíóEpÅçíä~åÇF^ÅíEOMMMF `^jep ÅÜáäÇ~åÇ~ÇçäÉëÅÉåíãÉåí~äÜÉ~äíÜëÉêîáÅÉ aa^ aáë~äáäáíóaáëåêáãáå~íáçå^åíenvvrf abp aáë~äáäáíóbèì~äáíópåüéãé c^`b cìååíáçå~ä^å~äóëáëçñ`~êébåîáêçåãéåíë dm ÖÉåÉê~äéê~ÅíáíáçåÉê kep k~íáçå~äeé~äíüpéêîáåé kep nfp kepnì~äáíófãéêçîéãéåípåçíä~åç mcmf é~íáéåíñçåìë~åçéìääáåáåîçäîéãéåí pbpm påçííáëübåü~ååéçpéêîáåéëmêçöê~ããé pfdk påçííáëüfåíéêåçääéöá~íédìáçéäáåéëkéíïçêâ pp^ ëáåöäéëü~êéç~ëëéëëãéåí tbpqj^o` téëíçñpåçíä~åçjçäáäáíó~åçoéü~äáäáí~íáçå`éåíêé içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PQ

37 ^éééåçáñoóoéîáéïéêçåéëë içå~äoééçêíekep^óêëüáêéc^êê~åfweé~äíüå~êépéêîáåéëñçêméçéäéïáíüié~êåáåöaáë~äáäáíáéëógìäóommv PR