1. Trouble-makers and Chocolate Teapots Carer and Commissioner views from East Anglia Fraser Serle Public Service Works 28 th June 2012 Higher Visibility

2. What is the presentation about? sharing experience and learning from interviews with carers and commissioners

3. Carers 7 parents put their names forward 5 were interviewed Mostly female carers Most the young people had sensory impairments Not all had received a diagnosis All gone through or in process of transition

4. Commissioners 54 commissioners identified and contacted 9 were interviewed Mostly NHS Mostly children and young people’s services All very passionate Aware there were shortfalls Aiming High was a pivotal lever Felt the future was uncertain

5. Who are the commissioners in East Anglia?

7. Thoughts on transition ‘The saddest thing is I’ve not got anything positive to say, is really sad. If talking about another young person of 17 or 18 would be getting excited as starting first new job, or university. This is a nightmare. Nobody has said ‘‘here you go; here is a pathway on where you can go or what you can use’’. Nobody can give you that.’ Parent

8. Thoughts on transition ‘No one seems to ask the family how they feel. We have to have coping mechanisms, there is just assumption you’ve been born with it. The agencies don’t work together.’ Parent

9. Thoughts on transition ‘One of the striking things about the transition process is a clear change in how our child is dealt with as a specific individual, with each day we are doomed – our voices are diminished.’ Parent

10. How to get things right ‘Those who are more vocal can be seen as troublemakers, so we need to break down the barriers between the local authority and the families. We have got reduced funding but we need to be more canny about the process and involve families earlier on so we get it right.’ Commissioner

11. How to get things right ‘ A clear assessment is important whereby short, medium and long term plans can be developed, family expectations managed, resources utilised and impact measured. The assessment needs to be correct, to manage expectations (of the child and family) and provide preparation for the family, as there are less services, also for the change in the way they will use/access services.’ Commissioner

12. Source: Dahlgren G and Whitehead M (1991) Policies and strategies to promote social equity in health. Stockholm, Institute for Futures Studies Determinants of Health Model with the services young people need before, during and after transition Acute and Specialist Services Mental Health Services Primary Care Services Community Health Services Children’s Services Adult Services Education Social Care Mainstream Youth Services Hospices and voluntary sector Housing Transport Benefit Services (DWP)

13. Responsiveness and Flexibility ‘Creativity and flexibility are crucial and being responsive to the changing needs within the whole family and not just focus on child or young person – they are primary concern but need to think how they interact with whole family network (including those people who are important to the young people) if they are to stand a chance of getting through this to the other side in as good away as possible.’ Commissioner

14. Responsiveness and Flexibility ‘ Health providers will need to develop flexible, community based models of service delivery responding to the personalised agenda and having the child/young person and their family at the centre of care. Health care will need to be delivered as an integral part of the overall support package ensuring service effectiveness and efficiency is achieved.’ Commissioner

15. Responsiveness and flexibility ‘Parents should be told about services and given information as it then gives them a choice if they want to access it if they can afford it.’ Parent

16. Final thoughts ‘This is a time of transition for commissioning with the decommissioning of Primary Care Trusts (PCTs) and the creation of Clinical Commissioning Groups (CCGs), significant restructuring within local authorities due to budget cuts and regional health services structures being altered too. This transition is leading to fragmentation of the current system and expertise, with it being unclear how the new structures will overcome this and work collectively.’ Former commissioner

17. ‘Had a transition social worker who was ‘‘chocolate teapot’’ useless.’ Parent

18. Acknowledgements The parents for sharing their stories The staff at East Anglia Children’s Hospices (EACH) for identifying parents willing to take part The commissioners who took part and their colleagues in transition services who helped track them down Maria Duggan for assisting in formulating the commissioner interview questions