March 2011
Young adults with kidney disease in Bristol are set to benefit
from a new project which is underway in the South West.
The pioneering project will see Bristol Royal Hospital for
Children and adult units in Bristol, Gloucester, Exeter, Plymouth
and Truro work together to develop new approaches to support
patients between the ages of 16 and 25 who have complex kidney
disease. This includes those who are on kidney dialysis, and who
have had a kidney transplant. The South West is one of just five
areas in the UK selected by service improvement organisation NHS
Kidney Care to spearhead this work. The outcomes from the 18-month
project will be used to help young people with other long term
conditions.
Children and young person support worker Sally Tutton and
paediatric community sister Jo Woodland have been appointed to work
with the staff and young adult patients across the South West to
implement the project.
Sally has worked with children for 14 years in various settings
including health, education and social care. For the last four
years she has worked at Bristol Childrens Hospital, supporting
children and young people with kidney conditions both in the
hospital and in the community.
She explained: The impact on children and young people with
kidney conditions is long lasting on both them and their families;
it affects every aspect of their lives. What is especially hard for
the children is the isolation they feel as none of their peers are
going through similar experiences. This can affect them beyond
childhood and into their adult lives.
Sally will work with the different adult units, providing the
necessary tools and resources for them to develop tailored support
for the young adult patients in their care. She will also work with
Jo to look at ways of increasing peer support and education for the
patients.
Jo has worked in nephrology for many years with both adult and
paediatric patients. In the last 10 years she has worked with the
community nephrology nursing team based at Bristol Childrens
Hospital, planning the care and offering support to children and
young people with a wide range of kidney conditions, and their
families. Within this role one of her main areas of interest has
been the transfer of young people into adult services. Jo said: I
have worked to develop a pathway of care for kidney patients from
the age of 14, which helps them prepare for the changes they are
going to face as they transfer to adult services. I now want to
ensure this way of working is shared, and help each centre in the
South West to develop their own pathway of care and support for
this vulnerable age group.
The challenges faced by young people with kidney disease are
many and varied and can be compounded by transferring from the safe
environment of a paediatric unit to that of an adult unit. As a
result young adults can feel isolated, alienated and ill equipped
to take on the responsibility for their treatment and disease,
while at the same time managing the life-changing move into
adulthood. There can be difficulties around dealing with the
responsibility of attending clinic appointments, taking medication,
and finding employment and/or education that fits around their
treatment. There are also issues around finding other young people
who have had the same shared experience of life with kidney
disease.
Beverley Matthews, Director of NHS Kidney Care, said: The work
being carried out by Jo and Sally and teams across the South West
will genuinely make a difference to the lives of young people with
kidney disease. People of this age group with complex health needs
can get lost in the gap between children and adult services, and at
the moment there isnt sufficient understanding of exactly what care
and support young people with long term conditions need. This
project will help to identify how best to support this group, and
the approaches developed in the South West will not just help young
people locally, but will benefit those across England, who are
suffering from kidney disease, and from other long term
conditions.
Ends
Issued by NHS Kidney Care. For further information, please
contact Katrina Gill on 07786 961093 or email Katrina.gill@kidneycare,nhs.uk.
Visit our website at www.kidneycare.nhs.uk.
Notes to Editors:
The South West 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, London, East
Midlands and North East. Learning will be continuously
evaluated, and shared amongst the project groups throughout the
duration of the project.
NHS Kidney Care 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.
