William Carlson is 7 years old and lives in Cambridgeshire with his mum Helen (33), dad Steve (44), and sister Eliza, aged 4. William has received care and support from EACH since he was 10 months old. Here Helen shares their story, particularly their experience of the EACH Symptom Management Nursing Service, and how helpful this has been for William, and the whole family…
William has several congenital brain malformations – Lissencephaly, Dandy Walker malformation and Agenesis of the corpus callosum. These affect him profoundly in every aspect of his life. His development level is similar to that of a newborn baby. He is unable to walk, sit independently, eat or talk. As a result William needs constant support throughout the day with his moving and handling, positioning, hygiene needs, feeding, medical needs and communication.
As a result of William’s brain malformations he has refractory epilepsy, no functional vision, is tube fed and has poor respiratory health requiring regular suction and chest physio.
Unconnected to his other needs, William has recently developed Type 1 diabetes and is now insulin dependent. Because of William’s other conditions he is unable to express when his blood sugars are too high or low, which makes the management of his diabetes more complex.
William needs to be cared for at all times by people trained in all his medical needs and who are able to interpret his communication, whether that be through vocal sounds, facial expressions or body movements.
William has received care from the hospice since he was about 10 months old. Over the years we have received a wide range of support from EACH, including overnight respite in the hospice and at home, a course of music therapy, counselling, and we have recently been allocated a Help at Home volunteer and a symptom management nurse.
Christmas parties, family days (especially a recent event which included a visit from Tesla and Ducati, which the children loved!), meeting Matt Edwards from Britain’s Got Talent, enjoying the playground and sensory garden, making friends with other families through the parent and toddler group… these are just some of our treasured EACH experiences, making precious memories for our whole family.
While all the services we have accessed have been so important and beneficial, I would like to talk specifically about the support we have received from the Symptom Management Nursing Service over the last year.
William’s medical needs have become increasingly complex over his life and the number of people involved in supporting his medical needs has therefore continually grown too. For us as his parents we were finding that William’s day-to-day needs were increasing, the admin and coordination around him was increasing, and we were constantly left wondering who to turn to about the different problems that would regularly present themselves. While we had lots of people to support various aspects of William’s needs, we had no one person helping us to coordinate and bring everything together. We felt very out at sea in many ways.
Our lead consultant referred us to the Symptom Management Nursing Service, as things has been getting increasingly complex and she thought it would be really helpful to us.
We initially met with our assigned nurse, Emma-May, and Debbi the hospice matron. They went through all of William’s various medical needs with me and gathered all relevant information on him. We didn’t really know what to expect from the service, but from that first meeting I had a sense that the team were going to become invaluable to us.
Emma has now become an absolutely key person in William’s care and I wonder how we ever managed before we had a symptom management nurse! Her role is quite varied and she supports us in many different ways. She can help us coordinate meetings where we need several of William’s medical team to come together; she can support us and our local hospital team when William is an inpatient in hospital; she can come to visit William at home to assess him when he is unwell to help us avoid a trip to hospital; and she’s always available to go through any of William’s complex symptoms when one becomes more of a problem or a new one appears. Because the team work closely with a specialist consultant at Addenbrookes hospital, they can always seek further advice on your behalf if you are concerned about anything. This has also led to us now having a symptom management plan in place for William, which covers all difficult symptoms and how we would escalate treatment and management of them when needed.
Having someone join “Team William” who has the time and specialist knowledge to support us, and who is connected with our other specialists has been so helpful. It has taken a lot of pressure off us as parents, has made us feel more supported and less worried for the future and given us a safety net for when things suddenly get a bit overwhelming.
EACH really does make a big difference to our lives. In the here and now it offers us fantastic opportunities to create memories as a family, it provides respite breaks for us, it provides support to us in caring for William’s complex medical needs, and a lot of friendly faces any time we visit the hospice – people who understand the complexities of life lived around a child with complex needs.
EACH feels like a big safety net to me. Without the services provided by the hospice we’d feel much more alone on this journey and a lot more worried for the future. William is life limited and we have no idea how long we’ll have with him. Knowing the hospice is there, able to provide end of life care and support to our whole family when the time comes is a huge comfort.