The Kentown Children’s Palliative Care Programme, a community-focused children’s palliative care initiative in North West England covers Lancashire and South Cumbria.
This collaborative programme funded by the Kentown Wizard Foundation brings together Rainbow Trust Children’s Charity Family Support Workers, Together for Short Lives’ Family Service Coordinators and Specialist Children’s Palliative Care Nurses from five NHS Trusts.
We asked Together for Short Lives’ three Kentown Family Service Coordinator’s about their highlights and what they are most proud of when looking back at 2024.
Steph
Biggest achievement this year?
I supported a family who needed support to find funding to get a new Wheelchair. I supported this family to complete charitable grant applications and managed to secure funding of £5,000! I then signposted and provided the family with information of other charities that may be able to support to gain the remaining funding for the chair, which the family felt comfortable enough to do themselves.
Highlight of the year for you
We received an end of life referral. The Kentown nurse for the area contacted the family service co-ordinators and asked for any urgent financial support available for the family. This family were struggling finically and as a result, this meant that they still had to work to be able to support themselves financially. I supported this family with a REACT grant, and a Turn2us grant, which allowed the family to take some time off work to spend with their child. When the child died, we provided the family with a Rosie’s Rainbow Pantry food shop, and a Butterfly Grant to support with any bereavement finances.
An example of when the team worked together for a great outcome
Sometimes within the Kentown programme, reaching families can be difficult as families don’t have the head space to engage with support and more professionals, especially if their child’s condition is very complex. Working collaboratively with the wider Kentown team has allowed time for me to build a positive rapport with a family who have previously struggled to engage with the family service coordination team. Through the support of the programme, we have been able to support this mum with a REACT application, a food voucher, and hopefully more charitable grants in the near future.
Ben
Biggest achievement this year?
I supported a family whose one wish was that we’d be able to support them in getting an all-terrain wheelchair, enabling a more accessible and inclusive world for their son and allowing him to join on family dog walks as well as participation in scouting activities. I supported her in making several applications and through the support of their own fundraising and charitable grants they were able to fund over £17,000 to pay for the chair. Nearly two years on and their wish had materialised.
Highlight of the year for you
Seeing the development of all individuals, teams and the project as a whole, has been a pleasure to observe and be part of. Last year (2023) I attended the Kidz2Adultz event in Manchester and talked about the Kentown Programme to people visiting our stand, nobody had heard of the project. What a difference a year has made, as this year (2024) I was back at Kidz2Adultz in Manchester and around half of all people visiting our stall either knew of the Kentown project, had had something to do with it, or had been supported by the project. It was a wonderful measure of the project’s organic growth and was a fulfilling moment for me to see how our combined efforts had made a difference to children’s palliative care in the North West.
An example of when the team worked together for a great outcome
We’ve had some referrals come through where their situation is so desperate that we’ve really pulled together as a team to ensure support is there as and when needed. An example of this was with a family who had no recourse to public funds and were in hospital for their son’s birth.
Due to an extended hospital stay, they were unable to work and faced impending homelessness. We were able to support as a team to ensure they found and had funds to put a deposit down on somewhere to live. In addition to this we were able to provide them with a food shop on their return home through our Morrisons partnership.
Once home they were supported by our partner Rainbow Trust and the Kentown nurse who were able to notify us of further family struggles due to being in hospital again due to their child needing surgery. The surgery was complicated and at this time, Rosie’s Rainbow Pantry were able to support the family at home with some food shopping. This extended stay and lack of income once again created a very challenging set of circumstances for the family and again we were able to use our partnership with Turn2Us to cover their expenses whilst in hospital. The family are now at home and on their return, were supported again through a partnership, this time with a food voucher for the family.
Lori
Biggest achievement this year?
I supported a Mum who was initially hesitant about the Kentown Programme and declined the service. However, after one of the Kentown nurses was able to speak with her she asked for further support. Myself and the Kentown nurse did a joint visit to the family home and we were able to get to know the family better. Since our visit, I have applied for a Turn2Us grant and £1000 was awarded which would help her towards driving lessons and Christmas presents. She was also awarded a new washing machine through the Children in Need Emergency Fund and I have supported her both in person and over the phone with a Carers Allowance application.
Highlight of the year for you
I have recently supported a family who have been known to the Kentown Programme for a while, they had been supported by the Kentown nurse in their area and a Rainbow Trust Family Support Worker but up until recently have not engaged with Together for Short Lives’ Family Service Coordinators. We have tried to contact the mum on a few occasions with no luck, however this last week I have been able to engage with her and have been able to offer her support through a food voucher and she has been awarded £1,500 through Turn2Us. This has been my highlight of the year as she has given me the opportunity and her time, to be able to support her and her family in what is already a difficult time as her son is currently in hospital.
An example of when the team worked together for a great outcome
To provide a happy, fun and festive experience for some of our Kentown families, we have planned a Christmas event at the Creative Space Center in Preston. This will include a buffet style meal, festive crafts, two sensory rooms with Christmas music playing and a cinema room where families can relax and watch a Christmas film if they need a quieter space. We have worked with our Rainbow Trust colleagues to plan the event and invited multiple families to come and enjoy the event with us. There will be 10 members of the Kentown team/evaluation team attending so families can see how we all work collaboratively, and we can all support families to make some wonderful memories together.
