Family's fears over hospice funding

A FAMILY whose dying son received treatment at the East Anglian Children's Hospice in Ipswich have today spoken of their concern at the funding crisis faced by the charity.

A FAMILY whose dying son received treatment at the East Anglian Children's Hospice in Ipswich have today spoken of their concern at the funding crisis faced by the charity.

Carl Button's son Toby was a regular at the hospice for the last six years of his life.

He suffered from Batten disease, a rare disorder which caused his brain and nervous system to degenerate, and needed round the clock care.

He died at the hospice in January this year, aged ten.


You may also want to watch:


Mr Button, 30, of Browning Road, Ipswich, said: “The hospice was so invaluable for us as a family and we just want to do anything we can to highlight the need for these funds.

“There are hundreds of families that are in the situation we were in. We met quite a few through our time at the hospice with Toby and I would hate to think they are going to miss out on the kind of care he had.”

Most Read

Toby used the hospice regularly for overnight stays to give him and his family a break.

Mr Button said: “It took me a while to feel comfortable enough to let him stay overnight but once he had been a few times I felt much happier about it and realised it was as beneficial for him as it was for us.

“He was completely pampered and spoilt rotten and just to have that one or two night break made the world of difference.

“We were always offered an extra night here or there.

“There was a lot of flexibility and it will be a shame if that is taken away by a reduction in beds.”

As revealed in The Evening Star earlier this week, the hospice has a £640,000 shortfall due to the end of a three-year lottery grant.

This means they will have to shut beds and shed jobs from their three hospices in Ipswich, Milton and Quiddenham.

Mr Button said that, although the hospice also helped the family out with home visits and day trips, there was no substitute for the relaxed surroundings of the hospice itself.

He said: “There's nothing hospitalised or clinical about it. It's like a little home from home. It's such a friendly environment and we were never treated like a patient.”

He added he would like to see more support for children's hospices from the government.

He said: “I think the government need to help out a bit more. This is vital care and the hospices should not have to do this much fundraising for themselves.”

Weblink: www.each.org.uk

Are you worried you could be affected by the changes to the hospice? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or send us an e-mail to eveningstarletters@eveningstar.co.uk.

Become a Supporter

This newspaper has been a central part of community life for many years. Our industry faces testing times, which is why we're asking for your support. Every contribution will help us continue to produce local journalism that makes a measurable difference to our community.

Become a Supporter