Specialist care, expert around the clock advice and detailed symptom management plans are just a few of the things that a team of specialist nurses from East Anglia’s Children’s Hospices offer.
The EACH True Colours Symptom Management Team deliver care and support 24 hours a day, 7 days a week ensuring all eligible life-threatened children, young people and their families have access to specialist support and advice. The team of highly qualified nurses offer expert advice to families who are making decisions around their child’s care and work alongside other health and wellbeing professionals to deliver a child focused care plan.
The official charity for this year’s Chariots of Fire event is East Anglia’s Children’s Hospices (EACH) and funds raised will be used to support their team. Mandy Binns, EACH Lead Nurse - Specialist Practice, said: “The Symptom Management team works across all sectors of health, education and social care, including hospitals, GP surgeries, schools and community nursing to ensure the children and young people we work with have a detailed symptom management plan in place. This ensures they are comfortable and their symptoms are well managed. Anticipatory planning is key to our work; ensuring plans are in place for whatever eventuality.
“No two families that we work with are the same, so we need to assess every aspect of a child’s condition. We will then work with the families and Lead Clinicians to develop a detailed plan of how to manage their symptoms – taking into account how their condition may change or deteriorate over time. We train family members on how to administer some medications to enable them to care for their child safely at home. We also advise, coordinate and work with the multi disciplinary team in hospital and community to enable transfers - be that to the family home or to one of our hospices.
“At a time when families have no control over how their child’s condition will progress we try to empower them – allowing them to have some control over how their child is cared for, giving them the advice and tools they need to keep them comfortable and as pain free as possible. We offer a 24/7 service so families can speak to someone on the phone about any concerns or changes in their child’s condition and provide clinical assessment in the home when necessary.”
The Symptom Management team began in 2010 as a pilot project and is now used as a model around the country, has 14 clinical staff and covers the whole of East Anglia. Staff members have undergone extensive training including Advanced Clinical Health Assessments, non medical prescribing and bring a wealth of previous experience to the role from various areas including intensive care, community nursing hospice care. They network constantly across all agencies to ensure a coordinated approach.
Deborah Lynn, an EACH Clinical Nurse Specialist working in the Milton team, said: “Our role is very much about clinical planning – working together with a family alongside other agencies to develop a pre-emptive symptom management plan which is completely child focused. We prepare families for every eventuality – potential changes in their child’s condition and what our steps will be should this happen. “A lot of the work we do is around end of life care, but this isn’t always the case. For many of our families we are helping them to live with long-term life-threatening conditions so they can manage their child’s symptoms and adapt as their condition develops. “Our focus can be on one specific symptom – for example we had teenager who was preparing to transfer to adult care as he had outgrown our service. He had a long-standing respiratory condition which was resulting in severe chest infections. His family had been told there was nothing further they could do to manage the condition, but by working closely with the family and health practitioners involved in his care, I was able to focus specifically on this symptom and develop a management plan for him to take with him to into adult care. His symptoms are much better controlled and there’s a plan in place for any changes that may occur.”
The Symptom Management Team was formed in 2010, initially funded as a pilot scheme by the True Colour Trust to develop a 24/7 community based service. EACH decided to continue to fund this service from 2013. The service is seen, both regionally and nationally, as a pioneering service in children’s palliative and end of life care and this model has since been used as a basis for similar services across the country. To show your support for EACH and their Symptom Management service visit their Justgiving page: www.justgiving.com/teams/EACH-Chariots or to enter a team in Chariots of Fire for Sunday 20th September visit www.chariots-of-fire.co.uk/enter