JHHHT has recently set up a monthly fund to pay for taxis for families in the care of the Kaleidoscope Children’s palliative care servcie who need assistance with transport to hospices, hospitals and for other outings.
(Kaleidoscope is an NHS run, nurse-led children’s palliative care service supporting families in Kensington and Chelsea, Hammersmith and Fulham and Westminster and was the service that helped care for Joshua Hayday).
How the fund helps by Caroline Rose (Palliative care nurse for Kaleidosope)
The hospices that our children most regularly use are on the outskirts of London and, up to this point, some families were not able to benefit from the valuable respite and services offered by the hospice because they did not have a car to use or could not afford the taxi fare. Even families with a car can find it very scary driving for 40-50 minutes knowing that their very sick child may become more unwell, have a seizure or become uncomfortable and require the care and input of their parent en route to hospice. This could mean that two or three adults would need to be available for the journey, almost impossible when work, study and other siblings are taken into account.
This was an issue that Katie and Nick Hayday, and the Kaleidoscope team, recognised as one that needed addressing urgently as good quality respite care is essential to families caring for their children with life limiting conditions at home (a 24 hour commitment often requiring mastering of complex medical skills and decision making.) Since the scheme has been set up three families for whom transport had previously been a barrier to accessing the hospice have now been able to start using their services.
The taxi firm that the JHHHT has decided to use has assured us that all its vehicles are wheelchair/buggy accessible. Their driver’s also receive particular disability awareness training. I hope this will ensure that families feel supported and comfortable and do not have to face awkward and difficult questions.
Children with life limiting conditions often have lots of hospital appointments, meetings and reviews. Although some hospitals are able to offer transport very strict criteria are put in place as to who can qualify for this and hoops have to be jumped through! They can also take hours to organise and be late or unreliable. There is more than enough administration and stress in the lives of parents caring for very sick children, being able to use Joshua’s trust will go some way to alleviating some of this.
On a more fun note the taxi fund has enabled us to plan some brilliant days out for the children we look after, creating special memories for them and their families and giving the children a break from what are often very difficult day to day lives. Most recently Zahra and her Mum and brother, and two of her carers were able to travel in style to the Winter Wonderland in London. It was a fantastic day and we saw the first smiles in a long time from Zahra. See more below.
Other children were also able to go to a big party in Harrods..we have been offered these tickets before but never been able to use them because it has been too difficult to get the potential partygoers to central london ….THANK YOU JHHHT!
Zahra’s trip to Winter Wonderland with Sam and Aine
We arrived in a taxi at winter wonderland and we knew we were in the right place because we could see fantastic multi-coloured lights and hear sounds of joy coming from other people. There was a mixture of music and my favorite sounds came from the games stools. We stopped at a stool and played a fishing game and won a teddy bear, at another stool we won a balloon. Although there weren’t many rides that I could go on, I really enjoyed walking around with Sam and Aine. We took pictures with snowmen and a funny talking tree and also took funny picture of our self.
All in all I had a really nice time and look forward to future trips.