Pioneering healthcare project tailors care around young people in Wandsworth
St George’s Healthcare NHS Trust has launched a project to help young people with kidney disease in southwest London balance their illness and their burgeoning lives.
As part of a national 18-month project led by quality improvement organisation NHS Kidney Care, the trust has formed a multidisciplinary working group, which combines the expertise of consultants, nurses, psychologists and social workers. The aim is to ensure that there is a consistent standard of care for patients in Wandsworth aged between 17 and 25 moving from paediatric to adult renal units.
As these patients transfer from paediatric to adult care they often face many challenges – from getting established in a new unit, coming to terms with long term medication and hospital follow-up, to difficulties establishing a social life and finding training courses or employment that fit around their treatment.
Joyce Popoola, consultant nephrologist at St George’s Hospital, said: “This group of patients have unique needs because not only is their care moving from a paediatric unit to an adult unit, where they are expected to be more independent, but their whole life is transitioning for example they may be going off to university, starting jobs or entering relationships.
“As these patients move into adulthood, they need specialist support close to where they work, live or study. They also need help taking control of simple but essential things their parents may have taken responsibility for in the past, such as attending clinic appointments independently, remembering to take medication regularly. Our aim is to make sure that these patients have the best support possible to manage their illness while going through major changes in their lives.”
The trust’s working group feeds into the newly-established London core project group, made up of a young people’s kidney care co-ordinator, consultants and nurses involved in adult nephrology working alongside consultants and nurses from Great Ormond Street Hospital and the Evelina Children’s Hospital, which host the paediatric kidney disease units in London.
The working group at St George’s Healthcare will analyse the number of young adult patients across Wandsworth and establish what support is already available, in order to identify how support can be improved. They will also work with other colleagues at St George’s and with the London core group to establish education and information programmes and a peer support network tailored for young adult patients.
Notes to editors
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London is one of five project groups in England leading this work. The other project groups are collaborations between NHS Trusts in the following regions: South Central, North East, South West and East Midlands. Learning will be continuously evaluated, and shared amongst the project groups throughout the duration of the project. The project is being managed at local level by a core project group, members of which include Dr Cormac Breen & Dr Paramit Chowdhury, Consultant Nephrologists at Guy’s and St Thomas’; Sue Cox, Consultant Nurse (advanced kidney care) at Guy’s and St Thomas’; a lead consultant from both Evelina Children’s Hospital (ECH) and Great Ormond Street Hospital (GOSH); and Clare Nottage, the young people’s kidney care co-ordinator.
A wider steering committee is being established, which will include:
- all members of the core project group
- a nurse and nephrologist from both ECH and GOSH>
- a commissioner
- two patient representatives
- a clinician from all other involved adult centres within the South East and North London
NHS Kidney Care (www.kidneycare.nhs.uk) works with clinical teams and commissioners of kidney care to transform the services available to those with kidney disease, in order to continually drive up the quality of care. The organisation works to ensure the implementation of the National Service Framework for Renal Services, a government pledge to improve quality of care for kidney patients in England by 2014. Clinical priorities are set by the Kidney Care Programme Board, a partnership between NHS Kidney Care, the Renal Policy Team and Dr Donal O’Donoghue, National Clinical Director for Kidney Care at the Department of Health.