Supporting Young Adults with CKD and Shared Decision Making Special Interest Group (SIG)

DRAFT TERMS OF REFERENCE

Aims

The aim of the group is to facilitate communication between healthcare professionals with a particular interest in:

  • The care of young adults (12 – 25) with CKD and their families/carers as they transition from paediatric to adult renal services.
  • The care of young people who present directly to adult services without transitioning from a paediatric service
  • Partnership between paediatric and adult services so as to present a consistent and collaborative approach from professionals working in the field
  • Promoting Shared Decision Making(SDM) and supported self-management for those with kidney disease
  • Promoting person centred care and partnership working using principles and values of co-production to plan future services.

Objectives

  • To provide a consultative forum that can provide advice on current and future direction for the Young Adult (YA) services locally and nationally and link with the national agenda on transition and Person Centred Care.
  • To provide a resource of interested professionals and patient representatives that could contribute at both national regional and local level to the planning, implementation, monitoring and reporting of service improvements relating to young adults and their carers
  • To provide support and guidance to the key worker role to facilitate service developments
  • To provide a forum to discuss issues arising from the YA experiences relating to services that may be relevant to group members and their constituents both in paediatric and adult units
  • To maximise opportunities for partnerships, networking and information sharing about YA transition across strategic clinical networks, specialist commissioning groups and clinical commissioning groups
  • To share best practice
  • To deliver an annual work programme agreed annually by the membership that will facilitate communication between healthcare professionals and patients with an interest in supporting young adults with CKD and Shared Decision Making in all patients with CKD.
  • Develop and offer educational resource and support for health care professionals to engage in shared decision making (such as Motivational Interviewing training)
  • Develop a programme to improve transition process for young adults with CKD across paediatric and adult services. This will include:
  • The development of a minimum data set for Transition
  • The development of shared interests in other disease areas particularly diabetes and cancer care in so far as these relate to transition
  • The development of links with a range of organisations to optimise opportunities for education, research and policy development in the area of interest. These organisations will include but not be restricted to British Renal Society, The Royal College of Paediatrics & Child Health, British Association of Paediatric Nephrology, Renal Association, Clinical Reference Groups and other arms of specialised and non-specialised commissioning.
  • Development of a YA forum
  • Monitoring and sharing of good practice both amongst renal teams and in other long term conditions;
  • Co-ordination with UK Renal Registry project on patient involvement and measurement of PROMS/PREMS/Decision quality.

Membership

The young adult CKD and SDM network is open to all healthcare professionals with an interest in the field. The YA and SDM special interest group will be used as a means by which interested members of the young adult and SDM CKD network can lead on the aforementioned objectives. It is proposed that in the first instance the Supporting Young Adults with CKD and SDM Special Interest Group will consist of the following members:

  • Adult nephrologists x3
  • Paediatric nephrologist x 1
  • Specialist nurse x1
  • Key workers x 1
  • British Kidney Patients Association representative
  • SpR linked with UKRR
  • Young adult representatives x2

A chairman will be agreed within the group and following approval by BRS council that person will be responsible for maintenance of this membership and will represent the Supporting Young Adults with CKD and SDM Special Interest Group (SIG) in its relationship with BRS council. This will include the provision of an annual report to BRS council at the end of each calendar year. The ill be subject to review an on annual basis approved by BRS council. In the event of a working life of 3 or more years it is expected that a means to ensure regular turnover of membership will be proposed to BRS council

Workplan: March 2016 – March 2017

  • Develop website pageon BRS site with link to resources and other websites of interest.
  • Email updates to all network members
  • Shared learning events every 6 months;
  • Co-ordination of specific regional training events as appropriate
  • Support for regular conference calls/e-seminars and face to face events.
  • Development of a YA focus group/forum
  • Develop a support group for YA workers – ¼ conference calls
  • Develop and agree a minimum data set for transition
  • Develop a business case based on current evidence to support the role of key worker
  • Coordination of working party for Young Persons’ activity weekend –Ravenstor

Reviewed February 2016

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Accountability

The Supporting Young Adults with CKD and SDM Special Interest Group (SIG) is subject to the BRS terms of reference for Special Interest Groups. The budget for the SIG will be held by the BRS who will be responsible for the management of any associated budget. The SIG will agree an annual budget with BRS council and any requirement for fundraising by the SIG.

Working method/meetings

An annual meeting likely to coincide with the BRS annual conference 3-4 monthly meetings by teleconference

Financial monitoring

The Chairman of the Supporting Young Adults with CKD and SDMSIG is responsible for meeting the recommendations for financial management contained in the British Renal Society Terms of Reference for management of Special Interest Groups.

Review

An annual report will be presented to BRS council, which describes the group’s activity in the preceding year and plans for the forthcoming year, a statement of the total current financial reserves of the SIG, a statement of expenditure and receipts for the previous year.It will also include a proposed budget for the following year, for approval by Council.Reports will be sent to BRS council four times a year via VP for Clinical Practice

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