Family support

When you’re trying to help your child, grandchild, sibling or friend through treatment for cancer, it can be difficult asking for help for yourself.

From the time of diagnosis, Candlelighters ensures that everyone knows where to turn for that essential support. Every family is allocated a social worker, who will be there to provide advice on a wide range of issues, from coping with the emotional demands of treatment to resolving financial difficulties.

The social worker can simply be there as a friendly face, a shoulder to lean on or someone to talk to. Or they can provide practical help such as arranging Blue Badge Parking Permits and applications for hardship grants.

We also run support groups for the whole family, including siblings, teenagers, and bereaved families.

We can provide a break from the routine and stress of treatment, whether it’s our family Sunday lunches on the ward, a fun day out for the whole family outside the hospital environment, a break in one of our holiday homes on the east coast, or the great morale boost of our annual Christmas party.

Sunday Lunch

sunday roast Every Sunday families of inpatients on the chiildren's and teenager cancer unit are invited to join the patients for Sunday Lunch on the ward. It’s the one day of the week when the whole family can sit down and eat together and helps maintain some normality of family life in the topsy-turvy world of treatment.

Holidays

Booking a holiday during treatment can be a nerve wracking experience as even the most carefully laid plans can go awry if the patient picks up an infection and needs to go into hospital for treatment with intravenous antibiotics.

But families whose children are being treated on the Leeds Unit are able to enjoy a break in one of the Candlelighter’s Holiday homes on the East Coast, safe in the knowledge that if necessary, they can be back at the hospital in an hour and a half.

The three luxury static caravans at Filey and three log cabins at Bridlington are available throughout the summer and although we get nearly as many cancellations as we do bookings, around 200 families each year are able to enjoy a much needed break away from the stresses of hospital visits and admissions.

Sibling Support Group

Candlelighters fund a sibling support group for brothers and sisters aged between 5 and 15 whose sibling is undergoing treatment. This gives them an opportunity to meet other children in similar circumstances and to share experiences whilst taking part in fun games and activities. Run by members of the Multi-Disciplinary Team including Social Workers, Macmillan Nurses and Play Specialists, the group meets every other month, usually on a Saturday.

Please contact us if you would like more information about the group.

Teenage Support

Teenagers and young people undergoing treatment are able to join in social activities on both on the Ward and away from the hospital. In addition there is a Drop in Zone with tea coffee and cakes for the under 25’s on Wednesdays between 9.30 to 13.30 pm at the Westmoreland Clinic 1, Level I, Bexley Wing. If you are a patient in Leeds and would like more information about the group activities or the Drop In Zone, contact Cat Austin on 0777 557 2960 or email cat.carroll@leedsth.nhs.uk

Under 13s Support Group

The Play Team organise regular activities for patients and their families giving them an opportunity to meet up and socialise away from the hospital environment. Further details about the groups activities can be found on the clinic notice board or by emailing the Candlelighters office.

Other Posts (including Eckersley House)

Eckersley House

Home from home accommodation for families whose children are in-patients at St. James’s Hospital is available in Eckersley House. The house is run by the Sick Children’s Trust, a charity which specialises in providing such accommodation at large regional hospitals throughout the country.

In recognition of the heavy use of the house by paediatric oncology parents, Candlelighters make a substantial annual contribution towards the running costs.

Dream Co-ordinator

A number of charities offer “dreams and treats” for cancer and leukaemia patients. Many issues need to be carefully considered to make sure the patient is able to enjoy the dream and arrangements can be time-consuming at a time when families are already under stress.

The Candlelighters Dream Co-ordinator provides an invaluable service for families ensuring that the dream is appropriate to the child’s needs and that appropriate travel and insurance cover are in place.

Teenage Activity Co-ordinator

A diagnosis of cancer for teenagers and young adults often leads to an increased dependence on their parents and a feeling of isolation from their peers. Patients benefit enormously from contact with other young people facing the same challenges.

The Teenage Activity’s Co-ordinator’s role is to provide patients with age-appropriate activities and therapeutic support. She also organises group activities both on the ward and away from the hospital. This encourages peer support and helps to re-integrate the patients back into the community.

The role has proved so successful that Leeds Teaching Hospital’s Trust took over the funding for the post.

Consultant Endocrinologist

Chemotherapy, radiotherapy and bone marrow transplantation can cause endocrine problems for some young patients.

Candlelighters provided pump priming funding for a second Consultant Paediatric Endocrinologist for Leeds. The post has now been taken over by the Hospital Trust.

Neuro-Psychology Post

Brain tumours are the second most common cancer occurring in childhood. Children with brain tumours are at a very high risk from neuro-development disability, due both to the effect of the tumour itself and the effect of the treatment.

Candlelighters provided pump priming funding to set up a neuro-psychology post in Leeds. Brain tumour patients can now benefit from a comprehensive neuropsychological assessment to help identify any difficulties with learning and to provide accurate information as to why the child may be experiencing problems. This information can be used to highlight areas of need and to access the necessary support.

Candlelighter’s Clinical Fellowship

Changes in working patterns introduced to meet the EU and Department of Health guidelines that came into force in 2005 mean that junior doctors are no longer allowed to work the long hours endured by their predecessors. Providing adequate medical cover caused huge problems for hospitals throughout the country.

Happily for our patients, Candlelighters were able to provide pump-priming funding for a Clinical Fellow for Paediatric Oncology Ward . This enabled the hospital to provide a safe and effective level of medical cover for the Unit.

Staff Nurse Radiotherapy Department

Candlelighters provided pump priming funding a paediatric staff nurse for the radiotherapy department to support the Paediatric Clinical Nurse Specialist.

This is a very specialised area of treatment and requires one-to-one nursing support.

Dinner Ladies

Many patients undergoing treatment for cancer or leukaemia experience problems with eating and drinking at some stage in their treatment. Side effects such as nausea, vomiting, sore mouth, loss of appetite and constipation all affect the children’s food intake. The problem is exacerbated when the child has to stay in hospital for a long period of time as the hospital food is served at set times and by the time it arrives at ward level is unlikely to tempt a child with failing appetite. It’s not surprising that hospital food always appear at the top of patients’ complaint lists.

Adequate nutrition is an important part of the therapy for children being treated for cancer. The better nourished they are, the better they will cope with their treatment, so Candlelighters were delighted to support an initiative to convert the ward and provide funding for Joyce and Elaine, our two “Dinner Ladies” who work in the ward kitchen, providing a flexible and freshly prepared food and snacks service for our patients.

Their day starts with a visit to each patient to discuss the menu and if there’s nothing that day that tempts, to offer a range of freshly made snacks, sandwiches or high calorie milk shakes. The service also includes a cooked breakfast for patients, “Fruity Fridays” and two daily “snack runs” when the children can choose a healthy (or sometimes not so healthy - Kit Kats are very popular!) snack from the trolley.

Patient Chris Chapman, whose treatment experience spanned the “before and after dinner ladies” period, explains the difference that Joyce and Elaine made to his hospital visits. “Sometimes the drugs give you desperate cravings for strange foods - ordering tuna fish sandwiches for breakfast just doesn’t faze them at all”, he said.

Early reports indicate that patients’ calories intake is improving and there has certainly been a huge drop in the number of complaints about hospital food. To watch Joyce & Elaine in action log on to the YouTube link on the home page

Play Team

The Unit has a team of Play Specialists working on the ward, the Bone Marrow Transplant Unit, the Outpatient’s Clinic and in the Radiotherapy Department. They provide a high quality play service that entertains the children during the long hours spent in the hospital and also helps to prepare them for the sometimes frightening and painful procedures that are part of their treatment.

As Mum Rachel explains “When Emma was first diagnosed we were sent for an MRI Scan. We were both terrified but the Play Specialist came with us and explained exactly what the machine would look like and what would happen. In the end it all seemed like the most normal way to be spending a Thursday afternoon.”

One of the Unit’s key principles to family centred care is that brothers and sisters are made to feel welcome. The needs of siblings to be involved in care is becomingly increasingly recognised and they are able to join in the activities organised by the Play Team both on and off the ward.

EckersleyHouse

As local hospitals are often unable to provide the specialist care essential for the treatment of children with complex and life threatening illnesses, seriously ill children are usually transferred to large regional centres for treatment. They often have to stay in the regional centre far from home for days, weeks or even months at a time. Naturally parents want to stay with their sick child at such a frightening time, but have to deal with the problem of where they will sleep, shower and eat. Leeds is lucky to have the support of the Sick Children’s Trust, a charity dedicated to running “Homes from Home” for the families of seriously ill children at specialist centres throughout the UK.

The original house was built in 1984 thanks to a generous donation from the Eckersley Family who realised the need for such a facility when their child was being treated at St James’s Hospital. Donations from Candlelighters and the Cystic Fibrosis Trust made up the rest of the funds.

As Leeds’s reputation grew as a regional specialist centre, the demand for parent accommodation outgrew the facilities in the original building and in 1992 the Sick Children’s Trust took over the management of the house and extended the facilities. Leeds was proud to be their first major project outside London. When children’s services transferred from St James’, the Sick Children’s Trust ran a fundraising campaign to provide a fantastic new facility at Leeds General Infirmary.

The new Eckersley House is next to the paediatric wards in Clarendon Wing, close enough for patients to be able spend time in the house with their families when they are well enough. Each of the 22 bedrooms has a direct telephone line to the wards so parents know they are only a telephone call away from their sick child’s bedside. There are comfortable communal spaces where families can watch TV or simply relax. Facilities for brothers and sisters with plenty of toys and books to make the children feel at home and fully equipped kitchens where they can enjoy cooked meals together. Being on the ward can be an intense experience and the house provides parents with a private space to gather their thoughts after a tough day.

For the last 18 years, Candlelighters have been making a contribution towards the running cost of Eckersley House. Many of our patients come from outside the Leeds area and for them it is a life saver. However, the running costs have increased dramatically since the move, so when the Sick Children’s Trust asked if Candlelighters could help, the Trustees were delighted to be able to increase our contribution to £24,000 a year to help meet the cost of paediatric oncology families’ use of these wonderful facilities.

For more details on what support we provide, read on or contact us. Click Information if you would like to find out more about childhood cancer.

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