World Hospice and Palliative Care Day - Making Every Moment Count
What is World Hospice and Palliative Care Day and Hospice Care Week?
They are the hospice movement’s chance to celebrate hospice care nationwide, and the amazing work that is being done to make sure everyone can benefit from brilliant end of life care. This year The Friends want to shine a light on the incredible work of Wisdom Hospice’s, Family and Carers Support Team (FSCT).
Who are the Family and Carers Support Team?
The FCST is made up of specialist social workers, specialist counsellors and a welfare benefit advisor who support patients and their extended family to live with life limiting conditions. The FCST’s role is to advocate, discuss and support the patient’s plans, giving information and ensuring the patient voice is heard. The patient may not have control over their diagnosis and prognosis; however, our support enables people to make informed choices around their future care plans and their end-of-life care. The team work with adults and children across the local community, Medway Hospital, and Medway Community Healthcare staff at Wisdom Hospice inpatient unit.
An example of how the Family and Carers Support Team can help.
- The patient was a 32-year-old woman who was first diagnosed in 2012 with metastatic bowel cancer. She had a history of depression, anxiety, and gall stones.
- The patient lived with her husband; they had 1 child from their relationship. The patient also had 3 children from a previous relationship.
- The children ranged from 6-12 years. 3 boys aged 12, 10 and 8 plus 1 girl aged 6.
- From 2012 to 2015 the patient managed well and was having active treatment.
- In 2015, the patient was diagnosed with disease progression, at this time she was referred to the hospice and was first assessed by the Community Palliative Care Team who are part of the multi-disciplinary team here at the hospice.
Family and Carers Support Intervention
- From that assessment the patient was referred to the Family and Carers Support Team and to our Welfare Benefit Advisor, to maximise income. They supported with claiming Employment Support Allowance, Carer’s Allowance, Personal Independence Payments, her blue badge, and Child Tax Credits.
- The patient was having regular contact with our specialist nurses and did not want ongoing Family and Carers Support but was made aware of the support available for the children.
- In 2016 the patient contacted Family and Carers Support Team requesting listening support for her 4 children.
- We discussed what support we could offer the children and the patient gave a clear idea of what she wanted the work to focus on.
- The patient was very clear that she wanted the children to understand her disease and she also wanted them to have support with facing her death.
- Due to the difference in ages, we would see each child individually in order to comprehend each child's understanding of the situation. So, 3 members of the team had a child each. The remaining child was the youngest and she was seen by one of our experienced volunteer counsellors who is a teacher.
- Work began with the 4 children:
- 6-year-old had 11 x one-hour sessions weekly
- 8-year-old had 10 x one-hour sessions weekly
- 12-year-old had 8 x one-hour sessions weekly
- 10-year-old had 4 x one-hour sessions weekly
- Sessions were all very different in content. The child I worked with was 10 so we worked using one of our interactive books "when someone has a serious illness". This book looks at the disease, where it is, it then looks at how it impacts on the person visually and how that makes the people around that person feel. We met at school as this young man required the structure of the school environment. The other children were seen at the hospice and professionals assessed each child and worked at their own pace and level of understanding, using art and play activities.
- This kind of support is resource-heavy, but research tells us that this pre-death intervention reduces the need for support later in life. In fact, the patient's brother-in-law died in a road traffic accident around a year before she died, and the children did not need any further support.
- Once the individual work with each child was completed, we withdrew, which allowed the patient and her family the opportunity to enjoy "normal family life" which is often something patients want to have but is difficult when lots of professionals are involved.
- The patient continued to be stable for some time.
- 2017 the patient started to become less well and had several admissions to the hospice for symptom control. As the children were familiar with us, they seemed at ease with visiting.
- The previous work with each child was helping them to normalise what was happening.
- The patient was admitted to the hospice in March 2018 where she died a few weeks later. The children were all present when she died. They were all then referred to Holding On, Letting Go, a children's bereavement charity.
- We also visited the patient's mother-in-law to assess her for bereavement services. She spoke about the children saying that they had already begun to adjust to the loss of their mother. "They talk about her all the time and they each have a memory box which she did for them".
- Our role as a team is to prepare for the worst while maintaining normality. Children respond well to clear language and open and honest conversations.
- We cannot change what is happening, but we can walk alongside to help improve the outcomes for children.
How you can help The Friends and FCST continue their support.
During a patient’s stay, they and their family and friends will get to know various teams at the Hospice – our team of professionals and volunteers, as you’ve read, can assist with a variety of needs from practical, emotional, or just a friendly chat. This may include nurses, doctors, physiotherapists, occupational therapists, or members of our Family Carers Support Team.
To allow this vital work to continue could you help with a donation?
£10 could help fund a book and craft activity to use during a child’s listening support session who has a parent under Hospice Care.
£50 could help fund a counselling session for a patient or their loved one, supporting them through a challenging time.
To find out more about the hospice please visit