Gillian Parker, Sylvia Bernard, Fiona Aspinal, Kate Gridley Social Policy Research Unit, University of York

Transcription

1 Gillian Parker, Sylvia Bernard, Fiona Aspinal, Kate Gridley Social Policy Research Unit, University of York Kate Light Centre for Reviews and Dissemination

2 Our funders: The National Institute for Health Research Service Delivery and Organisation programme Those who advised us: Department of Health LTNCs Research Initiative programme advisory group Social Policy Research Unit project advisory group Social Policy Research Unit Adults, Older People and Carers Consultation Group All those who participated in the research 2

3 The views and opinions expressed here are those of the authors and do not necessarily reflect those of the National Institute for Health Research Service Delivery and Organisation programme or the Department of Health 3

4 Background and aims 3 stages to the project 3 models identified Conclusions the way ahead!

5 National Service Framework for Long-Term Neurological Conditions published Quality Requirements Theme of integration ran through whole thing i.e. services should be joined up University of York research looked at integration The desired outcome of integration is continuity of care

6 Aims: 1. To identify what helps or hinders the provision of integrated services 2. To identify models of best practice 3. To develop a benchmarking system to assess the extent to which these models were available in England

7 Rapid systematic literature review In-depth case studies of six neurology service systems A national benchmarking survey/audit

8 Rapid systematic literature review In-depth case studies of six neurology service systems A national benchmarking survey/audit

9 Systematic search across 15 databases Looking for models of integrated service delivery for people with neurological conditions Evaluations and descriptions Published between 1985 and 2006 in English 9

10 Evidence base is poor Choice of outcome measures limited Issues of personal choice, empowerment or the experience of continuity of care largely absent

11 Rapid systematic literature review In-depth case studies A national benchmarking survey/audit

12 Start from the person with the neurological condition Ask about all services and support - about the whole package Focus on the desired outcome of integration - continuity of care (using Freeman s typology)

13 To help understand people s experiences In-depth interviews People with LTNCs Strategic staff Service providers Nonparticipant observation Documentary evidence To help understand the local context 13

14 Single person or team co-ordinating care across boundaries and advocating Specialist knowledge Long-term involvement (and accessibility) Flexibility Monitoring/ proactive follow up (enables discontinuities to be picked up and resolved) 14

15 Nurse specialists CINRTs* Day opportunities Key workers Specialist knowledge Advocacy, advice and carecoordination Flexible Have time for people Long-term Accessible Professionals from different disciplines working together: Specialist knowledge Advocacy, advice and carecoordination Holistic Flexible Physical base as focal point for care co-ordination Peer support Social and leisure opportunities Meaningful activity Learning and/or employment opportunities Long-term Ongoing support * Community Interdisciplinary Neuro-Rehab Team 15

16 Nurse specialists CINRTs* Day opportunities Key workers Specialist knowledge Advocacy, advice and care coordination Flexible Have time for people Long-term Accessible Professionals from different disciplines working together: Specialist knowledge Advocacy, advice and care coordination Holistic Flexible Long-term * Community Interdisciplinary Neuro-Rehab Team Physical base as focal point for care coordination Peer support Social and leisure opportunities Meaningful activity Learning and/or employment opportunities Ongoing support 16

17 Cause if I ve got any concerns, they niggle away at my mind It s nice to have somebody that you can somebody who is an expert, for want of a better word. That can give you some, sort of, guidance and reassurance. But, I mean, any questions about anything to do with it really [PD NS] is wonderful because she s available on her phone. I can always phone her (Mary*, Parkinson s Disease) But she s [MND NS] got access since we ve had her she s got access to a lot more things. Than what we ever had access to, if you know what I mean?... If you didn t have her to fight your corner you ve got no chance You just don t get listened to. (Lee s wife*, motor neurone disease) *All names have been changed 17

18 Nurse specialists Key workers Specialist knowledge Advocacy, advice and care coordination Flexible Have time for people Long-term Accessible CINRTs* Professionals from different disciplines working together Specialist knowledge Advocacy, advice and care coordination Holistic Flexible Long-term * Community Interdisciplinary Neuro-Rehab Team Day opportunities Physical base as focal point for care coordination Peer support Social and leisure opportunities Meaningful activity Learning and/or employment opportunities Ongoing support 18

19 Patrick described the community head injury team as the best thing ever. After his accident the team helped him to: regain control of his finances get his driving licence back liaise with the local authority to arrange homecare organise home adaptations that made him feel safer complain when social services let him down If it wouldn t have been for head injury team, I ll be quite honest, I think woops, I d have lost me temper a long, long time ago, and got nowhere and just really wrecked it. They re the only thing that kept me together. Patrick 19

20 Jeremy experienced a smooth transition from inpatient rehabilitation to the community team who: liaised with outside agencies to unfreeze his bank accounts made sure he was supported in college and in his new job directly provided counselling He now feels pretty independent, but still wants contact with the team: I think, you know, I think I need somebody to be there in case things aren t right basically. Jeremy

21 Nurse specialists CINRTs* Day opportunities Key workers Specialist knowledge Advocacy, advice and care coordination Flexible Have time for people Long-term Accessible Professionals from different disciplines working together: Specialist knowledge Advocacy, advice and care coordination Holistic Flexible Long-term Physical base as focal point for care coordination Peer support Social and leisure opportunities Meaningful activity Learning and/or employment opportunities Ongoing support *Community Interdisciplinary Neuro-Rehab Team 21

22 Philip had been coming to the brain injury resource centre for 9 years. He d got a GCSE there and said being around other people in the same boat helped him when he was feeling down. this place [the centre] has really brought me on as a person, you know Philip The centre was also his first port of call if he had a problem. Well, it s like I say, if I need help or anything I d just contact someone at the Centre, cause it s a fantastic place

23 it s amazing, cause I started going there about 3 years ago I started at 1.7 km an hour and I m up to 5.6 now Matthew Toby had been a keen public speaker before his accident, and after dinner speaking at his day centre helped him regain his confidence. Matthew enjoyed the contentious issues sessions at his day centre and was proud of the progress he d made in the gym. when I started at these places, I couldn t speak at all.... But [the centre] has got me to a situation where I can now speak reasonably well. Toby 23

24 However, services were not always easily accessible, and travel could be a particular problem for people with continence issues. Matthew the places I go to are fine. I just wish that I wish Headway had a branch in [home city]. I really do, cause the worst thing about going to [different city] is the travelling.

25 Survey conducted by telephone with Primary Care Trusts Spoke to the LTNCs lead or other person with responsibility for implementing the NSF Asked about all services available to people in each PCT area 118 out of 152 PCTs completed a questionnaire (77.6%) 25

26 Percentage English PCTs with Brain Injury Nurse Specialist(s) 9% PCTs 91% PCTs Brain injury nurse specialists No brain injury nurse specialists 26

27 Percentage of English PCTs with CINRTs All LTNCs Multiple LTNCs Brain injury Other LTNCs Don't know LTNCs No CINRTs 27

28 Percentage of English PCTs with day opportunity services that promoted continuity of care 64% PCTs 36% PCTs Brain injury day services No brain injury day services 28

29 Lack of local availability or capacity of services Restrictive eligibility criteria Referral anomalies Pathways ill-defined and unclear

30 3 types of service can promote continuity of care for people with LTNCs: 1 Nurse specialists 2 Community interdisciplinary neurorehab teams 3 Proactive day opportunity services 30

31 Conclusions They meet the NSF Quality Requirements but not everyone has access to them Interviews with staff showed that PCTs are struggling to lead on implementation: Competing priorities (targets/ restructures) Lack of high level engagement in LTNCs agenda Lack of funds

32 The way ahead Case studies showed that bottom up developments CAN make a difference Front line champions Voluntary sector

33 Gillian Parker Sylvia Bernard Fiona Aspinal Kate Gridley* Social Policy Research Unit (SPRU) University of York Heslington York YO10 5DD *speaker