I recall with fondness my Dad’s favourite phrase ‘it’s all going to plan.’ He was a man with a plan. It was a principle I adopted in my career in business, as a father in the care and support of my son, Thomas, and as a son myself in organising my Mam and Dad’s care.
Thomas was born with a rare condition, Lennox Gastaut Syndrome – not part of the plan! He is now 29 years old and has profound and multiple learning disabilities. He is registered blind, a wheelchair user, incontinent and unable to communicate in a meaningful way. As a result of his condition he has scoliosis and a number of other long term conditions including epilepsy which is difficult to control.
With such complex needs, a plan for Thomas’s support is not a ‘nice to have’ but fundamental to provide the right care for him. Thomas’s care and support plan is the blueprint to provide safe, consistent and quality care. Although a relatively easy read, inevitably it is a detailed and comprehensive document which requires his carers to digest and constantly refer to. We discovered early on that it is not such a useful document when emergency care in hospitals and similar settings is required. Therefore, another plan was needed. A snapshot of the critical information to share quickly with health professionals. The hospital passport was our solution. Just three pages of essential information prioritised – red, amber, green.
This document is kept in a travel bag with medication, change of clothes and other essentials and strapped to the back of the wheelchair. The passport is shared with all health professionals on arrival at the hospital. We take several copies as, inevitably, we will be repeatedly asked the same questions by junior doctors, pharmacists, consultants etc. It simply means everyone is on the same page, essential to help make decisions quickly and provide consistent quality care.
When both of my parents were diagnosed with dementia in their 80s it was devastating. And like so many families we had to find ways to keep them safe, happy and healthy. Keeping Mam, Margaret and Dad, Leo together in their own home was a priority. Then the usual process of tests, treatments and care provision commenced. All familiar territory having put in place a package of care for Thomas over many years and the lessons learned were used to benefit my parents. As their dementia progressed, they had to be supported in a care home. Hospital visits became more frequent after cuts and bruises following falls and a deterioration in their general health.
The idea of an emergency plan on a page was an obvious addition to deliver better care and support for them. We had lots of positive feedback when we shared the passport with health professionals. A common response was, ‘this is a good idea, never seen this before.’ It really made things easier for everyone. Therefore, I am so pleased DCAN have developed a standard format for people living with dementia – Dementia Urgent /Emergency Care Plan – a single page document in a simple format for people living with dementia, their families and carers to complete.
I hope you find this blog useful. It brought back so many memories for me. Mam and Dad, pictured above, were amazing individuals and wonderful parents. They deserved the best possible care and support we could provide. I think of them often and miss them so much. And for all those living with dementia I hope you are receiving all the support available to help you live the best life you can.
By David Johnston, a member of the National Strategic Coproduction Group for NHS England.