|  |  |  | | | | Centralising information in the hospital setting | | | | |
| |  | |  Russ Hargreaves
Release Date: 26 September 2008
Cancer information centres have become an important location for patients to seek information while they are in hospital for treatment or as a central point near to their home. The staff who work in these sites are trained in the area of information giving and seek to ensure that patients, carers and anyone from the general public can find supportive literature during their cancer trajectory.
Russ Hargreaves works at a cancer information centre located at the Chelsea and Westminster Hospital, London. The district general hospital treats a range of common cancers including leukaemias. They diagnose about 800 cancer patients each year and any rare cancers are referred locally to either the Royal Marsden or Hammersmith Hospitals.
Russ said: ‘We offer a wide range of cancer information to meet as many needs as possible, which includes emotional support and complementary therapies. I guess the backbone of our information is from Cancerbackup which has now merged with Macmillan Cancer Support. We are able to offer these booklets free of charge. For those that cannot read, or perhaps don’t read English, we have video’s, tape cassettes, picture books for people with learning difficulties as well as information written in other languages. For anybody who requires further information, we can guide people to helpful and authoritative websites.’
The centre has been open to the public for five years and have always based their work around booklets and leaflets as a starting point. Russ said their work is backed up by verbal information as he feels it is very important to talk through cancer information. For him, information giving is never about simply handing out leaflets.
Russ sees approximately 1500 patients and carers every year. ‘They come from all walks of life and have a whole range of different cancers,’ said Russ, ‘so this presents a real challenge as we cannot afford to specialise in one or two cancer sites. For this reason, we work very closely with our CNS’s and clinical teams. Also, many of our visitors have come from other hospitals and have found us via the web or perhaps through word of mouth. We don’t insist that they have to be Chelsea and Westminster patients to use our services.’
Russ said that one of their biggest user groups is nursing staff. ‘They routinely use the Macmillan Centre as a resource for themselves. This works really well as it means they have somebody else to order their literature and keep stocks updated,’ he said.
There are dilemmas to information giving, particularly in a changing service of healthcare in the cancer setting. Russ said: ‘I guess the biggest dilemma at the moment is “Payment by Results” which is already upon us. Here, a patient’s GP is essentially billed for any services offered to the patient. This means that hospitals have to keep a very close tally on which services a patient uses. Unfortunately, cancer information and support services are not currently costed so our patients “fly under the radar”. I can imagine a time when we will have to insist that our visitors are Chelsea and Westminster patients and refuse anybody from other hospitals and PCTs. This would be a very sad time indeed.’
Russ feels a good information centre can have beneficial impact to patients on large scale in a variety of ways, and said: ‘In my opinion, a good information service can have an enormous impact on both patients and carers and nursing staff. There is absolutely no doubt that the patient who takes up time in clinic asking lots of questions and who may be anxious, will benefit hugely from these sorts of services. We don’t just talk about cancer either — we will ask about relationships, financial problems, practical issues — in fact, anything the patient wants to discuss. We can offer ongoing counselling as well as relaxing complementary therapies. The end result is a patient who generally feels better supported and more confident about their cancer journey.’
There still is a lot of work to do, particularly when a patient is faced with the complexity of a haematological malignancy. Russ said: ‘There are some real misconceptions out there and we tackle these every day in the Centre. Many people still believe that a cancer diagnosis automatically equals death. So many will have watched their parents and friends die of cancer and it is difficult to convince people that they can survive their illness, especially since the advent of so many new treatments. We also specialise in treating a growing number of people with HIV-related cancers at Chelsea and Westminster, commonly NHL. This is a group of people with very different needs and we work hard to support people with this dual diagnosis.’
The centre’s work is integrated into other areas of the hospital. He said: ‘In addition to our information work, we also offer a range of complementary therapies including massage, aromatherapy and reflexology. We don’t make any claims about these services; they will neither diagnose nor cure people of their cancer. However, they do help people to relax which in turn can help them to cope better with their illness. We certainly find this on-ward. Our team of trained volunteers visit inpatients daily and the effect they have is incredible. Patients seem less anxious, more relaxed and hopefully better cared for. Whatever your views on complementary therapies, it’s undeniable that they can ease the cancer journey and make the cancer experience a little less stressful.’
Russ wants to see the service develop. The centre is funded by Macmillan Cancer Support, he said: ‘Many of the Nursing Leukaemia members will already have access to a cancer information and support services. If not now, then in the near future, as investment and expertise into this service has added great value to existing provision of similar centres and our feedback confirms this. It’s very important for nurses and doctors to realise that we are not in competition with them — we wouldn’t dream of interfering with this professional relationship between health professionals and their patients. However, if we work together, patients and their carers can feel even better supported and cared for, and that has to be good news.’
Russ Hargreaves works at the Macmillan Cancer Information Centre, Chelsea and Westminster Hospital. He is Macmillan Cancer Support Manager. Macmillan Cancer Care work alongside other cancer charities like Leukaemia & Lymphoma Research to provide information for patients and their relatives.
(May 30, 2008).
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