by Alistair Kleebauer
, Senior reporter
Thursday, January 3, 2013
When he retired after a life working in the National Health Service, Dr Tom Crusz realised he wasn’t quite done with the routine.
The Pay for a Day appeal, launched for Haven House’s tenth anniversary year, aims to get people to donate or fundraise to help meet the costs of one day’s care at the hospice.
Support of £3,835 would provide 24 hours of care for children with life-limiting conditions and their families.
People can pick particular days to honour someone’s memory or to celebrate a special day.
Director of nursing Christine Twomey said: “It’s a good idea to break it down into chunks and it helps the public understand how much it costs to provide care for children. There’s no excess here, there’s no fripperies, it’s very tightly managed.”
Donations account for two-thirds of the hospice’s funding.
The Recorder will be bringing you stories about Pay for a Day and its impact on the life of Haven House throughout its tenth anniversary year.
If you want to know more about Pay for a Day, call 020 8506 3630 or email email@example.com.
If his name, which often leads to people hanging up the phone on him in disbelief, doesn’t already bring to mind a degree of heroism, consider the fact that, at an age when many start to put their feet up, he realised he was missing his early starts.
The 68-year-old, who lives in Grosvenor Gardens, Woodford Green, needed a way to use the skills he built up over 20 years as a consultant haematologist with the National Blood Service.
It was then that he found the nearby Haven House Children’s Hospice in High Road, Woodford Green.
This year is the hospice’s tenth anniversary for which it has launched a Pay for a Day fundraising appeal, which is being backed by the Recorder.
Throughout the year, we will be speaking to some of the remarkable people, such as Tom, who make it such a special place for children who have life-limiting conditions.
He said: “I wanted to do something and not stay at home. I’d been used to getting up and leaving home at 7am.
“I looked at working in Epping Forest and at St-Martin-in-the-Fields [in Trafalgar Square].
“They showed me around and I almost signed the application form. But someone said it would be wasting the skills I had.
“I thought about the hospice, I knew it was there but I’d never been myself.”
An interview with the hospice’s director of nursing, Christine Twomey, in 2009 followed and Tom has been helping out ever since, giving up two days a week of his time.
Speaking to him and Christine at the hospice, which supports 150 life-limited children and their families, you sense that they form a formidable partnership.
Christine has overall responsibility for Haven House’s nurses providing palliative care, ensuring the hospice meets the highest standards set by the Care Quality Commission.
One of the first tasks given to Tom was classifying the diseases of the hospice’s children against World Health Organisation standards.
It’s far from the fun side of volunteering, drawing on his background of performing audits within the blood service and using his expertise to fill in the blanks from doctors’ incomplete notes.
But it has proved important to the hospice as it enters its tenth year.
Christine said: “I don’t think a non-doctor could do it. I don’t know what I’d do without Tom.
“[The classification] is helpful for those who commission services with us.
“They track how many children have certain conditions.”
Tom said: “It helps when we want to audit and want to look at the spread of conditions. It helps with statistics and looking at trends of diseases.”
The data collection also helped the hospice in taking part in a palliative care funding review with Great Ormond Street Hospital.
Christine in turn checks all the hospice’s practices through audits, often conducted with Dr Tom’s help.
The work can range from checking hand washing practices, kitchen controls or drug management, which Christine describes as a “huge responsibility for all health care practitioners”.
She said: “Most people out there would be amazed at the sheer level of governance we have.”
Tom added: “I don’t know how other hospices cope. I think we’re one of the leaders.”
When the Recorder visited, the nursing team was looking after one-year-old Oliver Clydesdale who has Apert syndrome, a genetic disorder in which the seams between the skull bones close earlier than normal, affecting the shape of the head and face.
He was there for respite care, giving him the opportunity to enjoy social interaction and fun at the hospice which can include music therapy and toys, while offering support to his family.
Haven House provides a host of services including sibling support groups, emergency care and post-bereavement support for families.
The range of conditions among the children presents challenges to the nurses.
Christine said: “The nursing team all have different backgrounds.
“If you work at Great Ormond Street Hospital there’s 20 people on the ward next door [to help].
“At Haven House, it’s nurse-led and we have to provide a plan of care.”
Luckily she can always call on Tom.
His role has grown since he started volunteering and has included writing a history of the hospice’s home called The White House and making records for all the children who come through its doors.
Should the nurses be in need of information through a data search or some background research, he is there to help.
He said: “I need to keep my brain and body active and I plan to go on as long as I can.
“Christine has so much on and she has to look after the whole hospice at times.
“It’s nice that I’m there to take some of the burden off her.”
Haven House is supported by a growing network of more than 170 volunteers and, while many people may not have Tom’s expertise, it can be helped through a variety of roles including gardening, fundraising and administration.
For more information on volunteering, visit www.havenhouse.org.uk.