Important information about admissions and reviews

Chief Medical Officer Simon Cohen explains Very Special Kids’ admission policy and how we review the care we give to families.

Very Special Kids has been offering paediatric palliative care services to children and their families for 31 years. We aim to offer these services to children who are assessed by their medical carers to have conditions leading them to be life-limiting in childhood. During this time, many hundreds of families have received support and respite.

On one hand, the numbers of eligible children has increased with the population over the years. On the other hand, medical care has advanced over the years, leading to improved symptom management, quality of life and length of life for many of these children.

Very Special Kids receives many referrals from families of children who have major developmental issues and who struggle under the demands of their care. However, because of advances in that care, they are stable and not thought to be life-limiting in childhood.

Very Special Kids follows an admission policy of obtaining advice from two of the child’s medical professionals to advise the application and confirm a diagnosis of a life-limiting illness to the best of their ability.

We understand that finding good nursing care and support for children with medical issues can be very challenging and is limited in quantity. A decision of non-eligibility for Very Special Kids services is not a decision taken lightly.

The improved medical care has also changed prognosis for many of our established families. Very Special Kids is charity funded and has limited resources to help families. The changed prognosis means that some children are thankfully no longer thought to be life-limiting in childhood.

Children who no longer meet the admission criteria are being reviewed. Again, Very Special Kids have a formal review policy requiring the advice of two medical carers to support decision making.

We understand that this process leads to tough decisions to be made for families and appreciate the understanding of the reasons behind such decisions. We will continue to provide palliative care services to the best of our ability and to reach out to as many families as we can.

Yours sincerely,
Dr Simon Cohen, Chief Medical Officer