Levers for Change

1. Levers for Change 1st May Taunton Racecourse Event Evaluation

2. Contents This document is designed to be read on screen Programme for the day slide 3 What you thought of the presentations slide 4 What you said about the day slide 5 What you said were the best things about the day slides 6 & 7 What you didn’t like about the day slide 8 The outcomes you would like to see as a result of the day slides 9, 10 & 11 Locality discussions slides 12 - 23

3. Programme for the day 9.30Registration and Refreshments • 10.00Welcome • Judy Walker, Director of Operations, Stroke Association • 10.15World Class Commissioning, Dr Steve Feast, Department of Health 10.30Doing your local leadership differently Professor Steve Onyett, South West Development Centre 11.15 Refreshment break 11.30Putting People First, Pam Richards, South West Personalisation Coordinator 11.50Doing commissioning locally, Jan Evans, Commissioning Manager, Wiltshire 12.15The ‘Richard and Judy’ ShowThe views of service users and carers, South West Alliance of Neurological Organisations 1.00 Locality Discussion 1.15Lunch and exhibition 2.00A model for a network, Lynne Barr, North East Long Term Conditions Team 2.30 Locality discussion 3.00Final Comments and Close

4. What you thought of the presentations

5. What you said about the day Has today helped you with what you need or want to do as part of your work or involvement?

6. What you said were the best things about the day • Hearing the views of service users and carers in the ‘Richard and Judy’ show, invaluable information and great to get their perspective (x22) • Service user and carer involvement in the day (x2) • Willingness to challenge current thinking • Local leadership presentation, Inspirational leadership talk (x3) • Good programme, varied speakers, good venue • Time out to focus on these issues • Very inspiring lectures • Network model (x3) • Inspiring to think that one can get a successful network running with no funding initially • Networking (x5) • Information on the exhibition stands • Meeting people, meeting people from other organisations in the SW • Sitting at a ‘Wiltshire’ table so that we could apply the bigger picture to our own patch

7. What you said were the best things about the day • Well structured with useful consistency of themes • Good balance, wide ranging • A thoughtful overview of key issues • Gaining ideas about how to change service at all levels • Good relationships • Opportunity to meet with other care providers from different backgrounds, carers and associations • Awareness of who is doing what, or not • Great mix of people on the tables • Opportunity to dedicate physical and head time to considering commissioning- how in my job I influence and am affected by it • Good venue, lunch directions etc. • Chocolates! Lunch!

8. What you didn’t like about the day • Prof Onyett’s talk was too short ! (x4) • Too much PowerPoint, you can not listen and read at the same time • The leadership stuff – ego fuelled and lacked structure, all theory , no practical application • Speakers rushed as the timescales were too tight, this ate into the time for networking too (x2) • The partnership talk didn’t add anything to the info I already had • Network discussion too late in the day, no time for questions • Network discussion was tricky to hold on tables with very small geographical representation, might have been better to hold a plenary discussion • Presented network model doesn’t reflect the local situation (x2) • The DVD – should have been there in person, patronising and too long and didn’t work properly, too much jargon, needed examples to explain the ideas (x3) • Some sheets of blank paper for notes would have been useful (x2) • Too much sat listening, other delivery styles needed, chance to move around and get to know who else was there needs to be built in to the day • Got very cold with excessive air con in the morning, later resolved • Venues should have accessible dedicated disabled parking bays • Buildings should be completely compliant with DDA I.e. provision of WCs for disabled

9. The outcomes you would like to see as a result of the day • This process is a whole system change – I hope it moves forward involving every agency • People just to get on with it and not be tokenistic or waste money • Further NSF implementation, more focus on neurological conditions(x2) and reporting information back to delegates • Joined up thinking resulting in across-the-board communication and coordination (x2) • More productive partnership working, closer working between health and social care locally • (x3) • Implementation of key points made, such as health professional responding to the need to improve communication and coordination • Investment in delivering services for people living with long term neurological conditions in the community • Feedback from services users experiences of personalisation • More time to discuss future proposed plans • A cradle-to-grave pathway for cerebral palsy within a general neurology pathway

10. The outcomes you would like to see as a result of the day • Further events giving examples of good practice • Follow up groups – assessment staff to be included especially in further events • Time to work on the big picture as well as meeting clinical needs • Valuing the work of frontline clinicians to a greater degree leading to cascading of leadership roles and empowering individuals • More services, improvement in access to services • Better publicity and information about different conditions • Services developing in Wiltshire • Engagement of patients in developing stroke services in Gloucestershire • Return to patient centred care • Promotion of appropriate service provision • Increased connections between professionals across health and social care • More volunteers supported to engage in co-production • Improved commissioning of services that allows frontline staff to really meet the needs of service users and not be restricted by protocols and funding • Patient related outcomes that are measurable and real and make real changes for people and their carers • Patient reported outcome measures for each specific neurological condition

11. The outcomes you would like to see as a result of the day • A regional neuro network for commissioners • The creation of a sub regional or regional network (x2) • A network for Wiltshire that we define for ourselves • Beginning of the process of networking to aid our development of the coordination of these new developments for patient input • Network developed in Plymouth and Cornwall • A network that works! • Development of a Devon network • A good network of neuro colleagues across health, social care and voluntary sector so we can share best practice • Action!

12. Locality discussions each table was asked to think about the following questions Who are your local leaders? • Is there a local vision for future services? • Is there a local plan for achieving this vision? • Are the voluntary sector, service users and carers involved in developing and implementing this plan? E.g. via surveys, consultations, as board members, in references groups, as service providers • Do you need help to engage with the voluntary sector, service users and carers? Network - Good idea or not? • If yes, should the network be regional, sub regional or local? • Where will the leadership come from? • Where will the funding come from? • Who should be involved? • Would YOU like to be involved? If yes, your name please • Suggest a name for the network

13. Locality discussions: Table 1 Who are the local leaders? • Medical and social, including clinicians, physiotherapists, OTs, professionals and others with special interests, GPs, pharmacists, mobility professionals, social care staff and family counselling services. • Some of the above will be non-professional, third sector and the group felt that there would need to be nomination of network leads and effective communication channels in all directions. Local vision • It was felt that there was ‘vision impairment’ and that it was not whole, with patchy levels of service. It was agreed that small, local hospitals offer good value Local plan • Planning is at varying stages of development, mostly at the ‘early’. The group felt that there was a lack of things being joined up and that baseline assessments would be helpful in determining a starting point. Voluntary sector, service user involvement etc • Not always the case with specialist services and levels of support for personalisation insufficient to enable people to make informed choices - and considered patchy. There are good examples but not for neurology as a whole. A participant who had a long term condition noted that he was involved in training some professionals, which was good for him and for those being trained. Fifty-percent of the consultants with whom he had worked had not seen PD patients during training. Help needed engaging with voluntary sector, service users and carers? • Yes!

14. Locality discussions: Table 1 Network discussion: • Networks are a good idea. • Networks should be at regional, sub regional and local level • Leadership should come from within ‘from each according to their abilities’ Should be a ‘doing’ network and not a steering group, involved in: • Development, Dialogue, Sharing, Supporting • Emphasising excellence through sharing • Everyone needs to recognise that mistakes can be made and learned from • There are various possibilities for funding, which does not always have to be new • Expenses and accommodation need to be covered • Identify needs and then seek to identify potential sources

15. Locality discussions: Table 2 Local leaders names given • Very new local vision, Neuro Specialist Team set up in N Somerset • Pathways being slowly formulated • Voluntary sector, service users and carers involved in acute service, and BNSSG (?) • Evaluations being done • Headway are good, but not good in S Glos, loss of partnership board in S Glos • MS centre Nailsea and Warminster • Vassal Centre • Spinal injury centre in Salisbury but services not readily available on discharge • Consultation with all conditions not good, tokenism and box ticking • PCTs and Acute Trust do not work together in BNSSG • Problem with sharing the community work – money • Works well in BaNES • Friction in N Somerset • Lack of patient choice on discharge – hospitals are making the decisions • Carers are the unsung heroes • Fire-fighting all the time which blocks the good ideas • Lack of money and resources • How creative can you be? • Giving time means NBRS (?) not achieved

16. Locality discussions: Table 2 • Network is a good idea, should be sub regional • Leadership should come from the PCT with the support of the SHA • Funding should come from the SHA • All groups should be included, plus local forum • MDTs/clinical groups should be local forum otherwise network is too big • University and SWMPO (?) • Suggested name: Neurosouthwest

17. Locality discussions: Table 3 Local Leadership • Via the SHA  • Frontline service staff need to be more engaged in leadership – as collaborators rather than followers  • South Petherton Hospital and Bridgewater Health Campus developments achieved via leadership through an inclusive approach • NSF Implementation Plan  • Role for vol orgs re hard to reach groups but must be credible as gateway/conduit to service users/carers • LINks role needs developing re LTNC groups/focus •  Specialist Nurses much valued by service users and as well as direct service providers also act as a point of leadership for their specialist area • Regional Network •  We thought it would be a good thing and were for it! •  Who would initiate – SHA?/Specialised Commissioning?/SWANO?

18. Locality discussions: Table 4 Local leaders:  named The LIT is a big group that meets quarterly and includes service users, carers, there is managerial representation, neuro services clinicians, Headway, MS, MND, PSP, Huntingdons, PD, CP etc. There are also disease specific sub groups.  They are looking to restructure as the group is too big The local vision for future service:There is a recognition that neuro is under resourced, a cinderella serviceThere is a realisation they need to involve the local authority and personalisationThe third sector has been vital in keeping everything going As the plan is pan Dorset there have to be different models of delivery as some is rural and some urban The plan:Looking at different models as the LIT too big - may be senior strategic commissioning managers feeding in to relevant sub Groups that feed into LIT.  Chairs of the sub Groups = the LIT.  Each sub group to be condition specific to see where they are with the NSF.  Will be firming up TORs to ensure all groups are the same.There are programme leads, one of which is LTC.  They are 'bunching up' groups of conditions with groups involving contract managers, local authority etc to look at commonalities and tie into the NSF.

19. Locality discussions: Table 4 Is the VCS involved:They are actively engaging with everyone to write a service specification.  Patients are to be involved in the writing of the commissioning spec.  They are feeding in what they want so they feel involved and valued!!They feel the are working well with the VCS etc but there is always room for improvement! Network: When we discussed the Network idea we did not get very far as Dorset feels it really does not fit in the region very easily and they work closely with Hampshire in the South East. Their commissioners feed in to Southampton, there is no specialist unit in the county so they work with them.They feel any network should be local as any bigger gets too big and cumbersome.

20. Locality discussions: Table 5 Local leaders are health and social care teams in each locality. Names given • No local vision yet – meeting being held on 15/05/09 • Voluntary sector and services users and carers are involved, but also need well-publicised contact at Wiltshire Council • Do not need any help to engage with the voluntary sector • Networks are a good idea, but capacity is a big issue. We all have existing networks • Within Wilts/Swindon, a neuro sub-group is being considered • This would bring health and social care planning together and would look at the big picture • Could SWANO be developed into a network? Or could it support a Wiltshire network?

21. Locality discussions: Table 6 • Leadership • Lack of link with people working on the frontline and commissioners • No integrated records between health, intermediate car • Review by PCT but did not involve frontline staff, public invited, but no feedback • Lack of coordination between acute and primary Care Services Improvement Partnership no sharing of information so communication is difficult • MND coordination driven by MND association • Review of stroke services involved service users and carers and voluntary organisation • Need to avoid tokenism • Changes recently introduced need to bed down before further action is taken • Network good idea, either at PCT level, or north and south of the region, regionally to influence future commissioning • Network would give the opportunity for local bottom up approach – there has been a user engagement event for a neurological review, but need to include clinicians perspective. We are all leaders but needs coordination • PCTS/PCOs will be future commissioners so align in some way for future funding

22. Locality discussions: Table 7 • Ensure region meet specialist needs • Joint transition group in Torbay • Only professionals working in joint services know their leaders (or providers) • But external organisations find it difficult to find out who to approach, have to enquire and may get passed around • Difficulty with cross PCT work • There is some vision and there are some plans • Larger representative groups have specialist commissioning but the commissioning is the difficult part of planning and providing services • Torbay has projects in attempt to join up planning • Devon is still subject to reorganisation/ vacant posts/ funding problems etc. • Finance battles between health and social services are less in Torbay • No involvement of services users and carers yet. Parkinson’s, service users involved in the recruitment of specialist nurses • Devon: re establishing itself to involve service users again after a review, now on the agenda • Concern about voluntary organisations creating specialist posts which are time limited. PCTs have to have commitment to continue funding posts, no guarantees in place. • People need training and devlopment to be consulted/ engaged, to make views valid to the process. There are ‘professional’ users who are consulted too regularly. PCTs go to clinicians for people to approach – may not have necessary experiences about services that are, or should be, available • What needs to be commissioned nationally and those locally is an issue. Both should exist

23. Locality discussions: Table 7 • Network is a problem – current groups exist, not covering all south west, or only certain conditions, needs to be all inclusive • Lots of good work overlaps, perhaps needs to be local, feeding into sub regional then regional • Local people should be used with regional representatives at regional level • Time is limited, problem with time being allocated • Education and connexions need to be included • People should be nominated by their organisation to demonstrate commitment . • People should identify key players in the region otherwise it will be the usual professionals. May need core membership, but bring in others as planning needs arise • Suggested name SW Neuro-alliance Network (SW NAN)