Dr Denise Williams says "Having a child diagnosed with cancer is devastating for any family. Trying to support their child, control their child's symptoms, juggle work, involve and care for the rest of the family often a long way from home is an added challenge. The Adam Rogers Care Team will make an enormous difference to so many patients treated at our unit, both while they are in hospital but also supporting them whenever possible to be in their own homes with their family. We are overwhelmed by the generosity and support of the Adam Rogers Trust and the many people who have been involved in all of the fund raising ventures. . We are all very excited to be starting the recruitment process now and hope to have the team up and running in early 2009. All of us at Addenbrookes cannot thank you enough- this initiative will make a big difference to so many people"
The inspiration
Adam was acutely ill from first diagnosis and Addenbrooke’s assigned its specialist
paediatric neurological oncology nurse to look after him. She helped us all cope
with the terrible rollercoaster of events and gave us access to the right practical
treatments such as physiotherapy, speech therapy and palliative care to help keep
Adam’s pain at bay. She also managed and co-ordinated the care Adam needed so that
he could die at home.
We were lucky to have a loving family, supportive friends and the flexibility for Mark to take time off work. It’s hard to conceive how parents in less fortunate circumstances survive without specialist help.
Background
Addenbrooke’s
Hospital in Cambridge is highly regarded for the excellence of care provided
to its paediatric cancer patients. At any one time, they will have around 800 children
coming through their doors with a diagnosis of cancer. Some will be new patients,
some receiving ongoing treatment and others on follow up (a number with long term
effects of their disease or its treatment). Over 70% of these children can expect
to be cured.
The hospital desperately needs a team of people to provide the same level of care we received to all its paediatric cancer patients.
The objective
The medical team on the Children’s Oncology Ward at Addenbrooke’s has put together
a proposal for what is considered to be a vital part of the ongoing care and management
of the children, both in hospital and once they go home.
In support of the proposal, the Adam Rogers Trust (ART) is aiming to raise £800,000 to finance a team of specialists that will be known as the ART Care Team. The money will fund the team for its first three years, and Addenbrooke’s has given a commitment to continue the funding after that.
The ART Care Team will work with families throughout East Anglia and North London. It will create the long-term opportunity to make a fundamental difference to thousands of families who go through the terrible ordeal of caring for a child with cancer. In time, it is hoped the team will become a centre of excellence for cancer care and be replicated in other hospitals across the UK.
We cannot imagine a better way to have a lasting testament for Adam’s wonderful but short life and to make a real difference for others.
The ART Care Team
This is a groundbreaking initiative in paediatric cancer care and will consist of
specialists working from Addenbrooke’s Children’s Oncology Ward. The services provided
by the Team will include:
- Liaison
Close liaison between all involved with a family whether at Addenbrooke’s, the district hospital, the local general practice or at school. This will ensure that specialist advice is available and that care is coordinated for each family whenever possible at or close to home. Support for schools is essential in promoting the social and educational reintegration of the child. - Social support
Ensuring that patients and families have access to state help and organisations that can provide support in the community. - Therapy
Including physiotherapy, occupational therapy and language therapy (which is particularly relevant for children who have received treatment for a brain tumour, some of whom will require intensive rehabilitation to achieve the maximum recovery). Therapy may be either through direct involvement with the child or by support and specialist advice and education to local teams within the region who can deliver care close to home. - Psychological support
For the patient and their family. This involves preparing children for surgery or painful procedures and supporting them through treatment (counselling, role play, play therapy). It also includes support for the whole family, all of whom will be affected by the diagnosis of childhood cancer. - Palliative care
To provide expertise in symptom control such as management of pain, breathlessness and swallowing difficulties. This achieves the best quality of life for as long as possible. - End of life care
For both the child and their family.
