Mum’s plea over care for terminally-ill Poppy
LITTLE Poppy’s mum has been forced to make an unbearable threat: “Get me the help my terminally-ill girl needs or I’ll put her in care.” The gorgeous eight-year- old may not live beyond the age of 10.
With possibly just months to live, she is blind, unable to speak or walk and needs tube feeding.
Poppy Blewett-Silcock has Warburg Micro Syndrome, a cruel genetic condition only documented since the 1990s and so rare there are fewer than 30 people in the world with it.
And, it is in these heartbreaking circumstances, that Dr Tymandra Blewett-Silcock says she and her husband Craig feel “completely let down” over their only child’s care.
They say they have reached a “desperate” stalemate with social services and the local health board over funding for the nursing, respite care and equipment Poppy urgently needs, and warn that, if they cannot get the help they need, she may have to go into care.
Her parents – both carriers of the gene – received Poppy’s diagnosis in October but have since been told by Caerphilly council’s social services and Aneurin Bevan Local Health Board (LHB) that the other organisation is responsible for her treatment. The couple say they have been left waiting six months as neither body will take responsibility for funding her support.
“We feel completely let down, we don’t like to ask for help and we muddle on, but when we have to beg the reply we get is it’s not our job to help to pay for this,” said Dr Blewett-Silcock, from Caerphilly.
“I don’t want to know about that, I just want help. First of all it’s been about a respite issue, which has been going on for more than a year – would it be paid by social services or the health board?
“Poppy was diagnosed in October and the following day we had the respite stopped. I don’t know if they knew about the diagnosis but social services decided she had nursing needs but the health board don’t agree with that.
“I got the Children’s Commissioner involved and the respite was reinstated, which is 24 nights a year respite, but we’re waiting to hear if this will continue.
“It’s all very complex. It’s like the chicken and the egg argument all the time.”
Poppy’s complex care needs also require her to have specialist equipment, and her parents are also waiting to hear if they can have a hoist to help lift their daughter, plus a specialist wheelchair and bath seat.
Dr Blewett-Silcock, who has set up Parents of Partially Sighted and Blind Youngsters (Popsy), a charity that helps parents with disabled children, said: “I can’t believe that they treat people like this, we are just left to get on with it. It’s possible for them to order the equipment but there’s no decision on who’s going to pay.
“I did tell social services if I can’t get a break they are going to have to find someone else to look after her and she would have to go into a hospital. I said that out loud, which is fairly extreme for me, as I normally get on with things, but we are desperate for respite help.
“Meetings are held but we don’t get told the outcome, we have to follow everything up. I know this is the case for other families in the borough that I’ve met through Popsy.”
Despite severe disabilities, Poppy is a happy child who enjoys going to school at Trinity Fields in Ystrad Mynach.
“Poppy has to have hourly tube feeds and medication, which starts from 5am, and at 9pm she is on a water night feed. I’ve tried not to let it restrict us and we get out and about as much as we can,” said her mum.
“Poppy is a really happy child and is a mischievous bundle of fun, she’s taught us a lot, especially not to worry about the little things.”
The council and LHB denied they had reached an impasse. A spokesman for Aneurin Bevan LHB said: “Due to patient confidentiality it would not be appropriate to comment on the details of individual cases.
“Continuing health care cases do need to be thoroughly assessed and we apologise for any delay whilst this work takes place. We are working with the local authority to ensure that the equipment required is sourced as quickly as possible to bring about a satisfactory conclusion for the family.”
A spokesman for Caerphilly council said: “We have worked closely with the family over a number of years to provide the best levels of care and support for their needs.
“These needs have changed and become more significant over time, so we have recently reassessed the situation to identify the most appropriate equipment for their home.
“Unfortunately, some of this equipment is of a bespoke, specialist nature such as hoists, slings and seating, which needs to be purchased and installed by specialist suppliers.
“We regret the delay due to technical requirements, but we would like to assure the family that we are doing everything possible to speed up this process and ensure they receive the best facilities we can offer.”
Parents of Partially Sighted and Blind Youngsters, or Popsy, is a charity offering support to other parents and also organises group trips to Disneyland, Paris. For further information visit www.popsy.org.uk or e-mail [email protected] Dr Tymandra Blewett-Silcock is also in touch with other families living with Warburg Micro Syndrome after setting up a Facebook page.