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West Sussex Review of Services for Children and Young People with Complex Health needs: Emerging findings and key issues

Objectives and Background to the Review. A critique of existing services to children with complex long-term needs.Identification of future needs and likely demands on services.Understanding of patient, user and carer needs (and to ensure that these drive change).Recommendations for improvement

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West Sussex Review of Services for Children and Young People with Complex Health needs: Emerging findings and key issues

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    1. West Sussex Review of Services for Children and Young People with Complex Health needs: Emerging findings and key issues Philippa Russell, National Children’s Bureau E-mail: prussell@ncb.org.uk

    2. Objectives and Background to the Review A critique of existing services to children with complex long-term needs. Identification of future needs and likely demands on services. Understanding of patient, user and carer needs (and to ensure that these drive change). Recommendations for improvement and options for change.

    3. The focus of the Review Children and young people with complex long-term health care needs. Reviewing the system of care provided rather than a detailed analysis of one or two individual cases (although Review will include some case studies). Understanding how services are delivered by all providers (eg NHS, social care, education and others) and arrangements for commissioning.

    4. ‘Living with complex needs – the parent’s journey!’ ‘Me [as a parent/carer] – or more accurately the person I have had to become – makes our family stronger. Without me, our family would disintegrate. I act as liaison point, advocate, secretary, nurse, taxi, physiotherapist, occupational therapist, sometimes home teacher, in fact I am the master of multi-tasking. It was not my career choice to become a carer rather than an ‘ordinary parent’ but it is now my long-term vocation. I want to be an expert partner in care, but all too often I just feel invisible – and tired!’

    5. The background to consultations Two parent/professional workshops and a parent survey (targeted postal communication and open engagement via West Sussex Parents Forum website). 112 parents have so far responded to the parent survey – replies still coming in. Interviews and visits (ongoing) with key commissioners, providers and stakeholders.

    6. Key messages from the consultations Information, advice and advocacy: At initial diagnosis, at points of transition in the child’s life. The need for a key worker, lead professional or designated personal contact point: Strong messages about the need for ‘easy access to someone who understands our child, who can give emotional support as well as practical advice.’ Creating a ‘team around the child’: One parent described herself as ‘collecting professionals like some people collect stamps’. Strong support for ‘at least one annual meeting with EVERYONE involved meeting face to face.’

    7. Getting it right from the start Interest in further developing the Early Support Programme in West Sussex: ‘We parents need to feel part of a team right from the start. Lots of good professionals out there, but you are not ready to become an expert partner in the care of your child so soon after the diagnosis. Sometimes you feel that your child is a jigsaw, everyone owns a little bit but nobody helps you to put him together again!’ Early referral: ‘How does your (disabled) child start his or her journey? We find different professionals use different referral routes, it’s confusing. We need a parent guide, a booklet or pack, a passport to tell us how it all works across the system. I think the professionals would like a guide too!’

    8. What’s working well? Aiming High for Disabled Children – ‘It helps you have fun as a whole family – it’s so easy to forget the family around a disabled child.’ Some excellent individual professionals: ‘Professionals who care about you and who go the extra mile’. Short breaks/respite care and sitting and buddying services: Highly valued (they keep us going as a family), generally satisfaction with quality but concerns about quantity; eligibility routes and the availability of a ‘menu of options – with no implied criticism if you do want overnight care.’

    9. Families in context: Personalisation, partnership and co-production – the big ambition Creating a ‘road map’: Managing Initial diagnosis and discharge better: Concerns about complex initial diagnosis, discharge and referral arrangements. Multiple relationships with London hospitals and other specialist out of area services. Working together: Exploring options for developing a key worker/lead professional role for children with complex needs. Family support: Family Plans/’Passports’ with user-friendly information pack to help parents plan and access practical support. Recognition of emotional and physical impact on families of caring for children with complex needs.

    10. The challenges – some problem areas! Equipment: Parents dissatisfied with provider, commenting on ‘erratic delivery’, ‘delays in provision of equipment or repairs – by the time I got the chair back, he had outgrown it’, ‘attitudes of staff’. Incontinence services: General dissatisfaction with quality and quantity of supplies – parents asking for individual budgets or direct payments to purchase their own supplies. Parents and some professionals felt system unduly bureaucratic (‘having to measure input and output of fluid on top of everything else, when we all knew what he needed.’ Transport: Support for WS Parent Forum Report – ‘transport is key to use of mainstream services in a big rural county.’

    11. More challenges and areas for further work Managing transitions (at pre-school, primary and secondary transfers and during transition to adult services): Consistency, continuity and recognition of changing needs seen as vital. Parents particularly concerned about transition to adult services (‘I see a black hole when he leaves school. I can’t see a future- all that investment in his education and we are coming to a full stop.’ Speech and Language, Physio and OT services: Concerns about shortfalls (but recognition of problems of recruitment) – some parents interested in development of ‘consultant outreach role’ for therapists, particularly in school situations.

    12. ‘If I could change one thing, I’d invest in families’ [Parent Workshops] ‘Some children’s care packages are so complex’: Developing the key worker or lead professional role as integral to the development of care pathways. Supporting the child within the family: Using the Aiming High programme to develop a wider range of access and support services for disabled children and other family members. Understanding how the system feels to families: Anxieties about Panel decisions, ‘we sometimes feel we are just money – people need to understand the emotional journey of having a disabled child. You want professionals to value you, to keep you up to date, to be honest but respectful if you can’t have a service or the waiting list is never going to end. If you ask the families, you might actually make better use of the resources you have!’

    13. Barriers to improvement? [Parent/professional workshop discussion] ‘Managing the current mis-match between local authority, education and health geographical catchment areas , accountability and funding streams.’ ‘Addressing the legacy issues from previous reorganisations!’ ‘Inconsistent health cover and input in schools.’ ‘Psychology and therapy service – problems in recruitment. Can we deliver support in different ways?’ ‘Improving links between acute and community paediatric services and with specialist providers’.

    14. The way forward: key principles Maximum choice and control to enable the whole family to enjoy a good quality of life as a family. High expectations – with honesty about short, medium and longer term goals. Non-discrimination and equal treatment in access to health, education and social care services Openness and transparency in allocation of resources.

    15. Milestones for success ‘Ending the post-code lottery:.And a single door to go through’: Transparent, equitable access routes to services and support for children with complex disabilities and their families. ‘Better integration of services, developing a ‘team around the child’ or ‘team without walls’ approach to avoid duplication, improve communication. ‘Building on success’: Engaging parents in improving information and advice on local options and the further development of short break and family support services. ‘Valuing the third sector’: Parent support groups and third sector widely valued, but concerns about sustainability.

    16. Milestones for success: key messages from parents High quality information and support. - A care pathway that is understandable – with integrated assessment, honesty about resources etc., a family support plan or passport and at least one annual ‘one stop shop’ with the team around ‘Getting a life’: Support for the whole family – short breaks, leisure activities, family activities and clubs and help with everyday living – ‘ensuring the survival of third sector’. Support for mainstream services (eg school, leisure etc.) Training for parents (eg autism, epilepsy, behaviour management)

    17. Future challenges A changing population of disabled children: ‘new survivors’ and more complex needs. Ending the postcode lottery: How can we develop care and support services that are personalised but also consistent across the county?

    18. Next Steps…. New national guidance on Continuing Care issued 26/03/2010. Recognition of the complexity of multi-agency commissioning and provision for children and young people with very complex needs – but new opportunities for integrating specialist and mainstream services and supporting children and families to have ‘ordinary lives’. Designing personalised and outcome focused care pathways in West Sussex: Learning from national experience and building on local capacity – next steps. Further analysis, exploring options – we need your views and comments!

    19. What the Review hopes to achieve What are the current experiences of children, parents and stakeholders and what are their views about opportunities for change and development? Better understanding of the arrangements for commissioning and delivering services, in the context of current resources, quality issues, gaps in provision and the need to achieve more effective integration and family satisfaction. An analysis of future needs and demands.

    20. What the Review hopes to achieve (continued) Options for change – using care pathways to illustrate current arrangement and future models. Recommendations outlining areas of progressive improvement, including performance measures, quality indicators and user satisfaction and financial analysis. Families (and their disabled children) as partners in change – parents and other relatives crucial to outcomes of review – ‘no consultation without feedback, no change without real partnership’.

    21. Making it happen…… ‘Making change happen in what all those economists call a ‘cold climate’ is going to be challenging. They [the politicians] all talk about cuts. But if you ask the parents, you can do it better. We are the best investment for our children. It’s not all about money, the most important things are attitudes, respect, understanding of our everyday lives. I hope this Review makes a difference – if we parents are not part of the solution, we will certainly be part of the problem!’ [Parent at parent workshop, Spring 2010]

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