Government and doctors urge patients to become involved with cancer care

June 21, 2003

NOT FOR RELEASE BEFORE 12.30 BST, SATURDAY, 21 JUNE 2003

People with cancer, doctors and politicians are joining forces in Edinburgh today (21 June) to improve the care of patients. At a special seminar organised by the European Society for Medical Oncology, patients and oncologists will aim to create a genuine patient-physician partnership that spans Europe.

"Patient involvement is a key component of the NHS strategy," says Dr Anna Gregor from the Western General Hospital in Edinburgh. With the general trend towards patient empowerment, cancer networks are leading the field to put policy ideas into practice. "We are, however, still some way from true and consistent patient representation in all aspects of cancer services," says Dr Gregor, who is lead clinician for cancer in Scotland. "We want to achieve something that makes a real difference to cancer patients and their experiences."

In Scotland, patients are familiar with information about high rates of death from cancer and unfavourable comparisons with services in other countries. Dr Gregor, who will speak on 'a manager's perspective', believes that they need to learn about and help shape Scottish cancer services and compare them with other countries. The seminar will draw patients and oncologists from around Europe who can contribute to the discussion.

Until recently, there has been little opportunity for collaboration between patients, doctors and governments. However, in the UK, the government now recognises cancer as a priority. "Politicians realise the power of the patients," says Dr Ian Gibson MP, who is chairman of the All Party Parliamentary Group on Cancer. Speaking from a 'politician's perspective' at the seminar, Dr Gibson says, "The government wants patients to be actively involved and to pressurise for more information on cancer care."

Journalist and broadcaster, Vivienne Parry, co-chair of the 'patient-physician partnership' session advised patients that for their voices to be heard they need a co-ordinated approach. "There is a danger that too many separate voices will not be heard," she says. "The government needs to hear one voice." At the same time, groups must continue to talk to the media to tell the outside world what it is like to live with cancer.

The challenges of cancer care are widespread for both doctors and patients. "It may be the same disease across national boundaries but there are significant distinctions amongst the patient populations which doctors have to be aware of in multi-cultural societies," says Dr Michael Cullen from the Queen Elizabeth Hospital in Birmingham. Dr Cullen, who will co-chair the session on 'patient-physician partnership' adds, "Patients need to know how they can help the physicians understand their physical, social, emotional and spiritual needs."

ESMO believes that all patients should be given the best quality care and be able to make choices about their treatment. Patient advocacy helps patients to help themselves. "Cancer care works best when the patient and doctor reach a joint decision about the best treatment for that patient," says Jean Mossman, an independent healthcare consultant and chairman of the session on 'the impact of cancer'. "The dialogue today will help show doctors and patients how this might be achieved," she says.

From the point of view of someone who has had cancer, Lesley Gower believes that too often patients are not heard by the medical profession. Ms Gower, who has recovered from ovarian cancer and now works for the charity, Ovacome, said, "We have progressed from simply taking instructions from the doctor. When cancer is diagnosed, you should enter into a 'contract' with your doctor and share the responsibility for the treatment programme." ESMO's patient seminar will help doctors and patients understand each other's concerns.

Building on the success of the first patient seminar in Nice in 2002, this year's seminar will tackle issues such as coping strategies, clinical trials, genetics and complementary medicine. At the end of the day, a voting system will probe the views of delegates - patients and professionals alike - on difficult choices, such as taking part in clinical trials and what to tell terminally ill patients.

"The ESMO patient seminar will allow doctors and patients to explore the things that matter so that both sides gain an insight into each other's priorities and problems. It is one of the most exciting initiatives happening in cancer," concluded Ms Mossman.

PATIENT STORY

Lesley Gower's sabbatical did not work out the way she planned. After working for the army for 22 years, she felt it was time for a career break but no sooner had she left work than she started feeling unwell and, at the age of 42 years, was diagnosed with ovarian cancer.

Lesley had surgery and chemotherapy in November 2000 and is now in remission. Having cancer changed her life completely. A strong and competent woman, she says, "Until then, nothing had been a problem. I had been fit and healthy and had had a great career." True to her character, when cancer was diagnosed, Lesley coped quite well. "You've just got to get on with it - you have no choice. And I needed to be strong for the sake of my family so that they could support me," she says.

As part of her assessment and after care, her doctor suggested genetic counselling, partly because her grandmother and aunt on her father's side had had cancer. This helped Lesley understand her illness. She was looking for a reason for why it happened and now knows that because of the family history of cancer, there is nothing she could have done to avoid it. She carries the BRCA1 gene that is often linked with Ashkenazi Jews, which led to an interesting discovery about her ancestors!

Although she got through the experience, she admits that cancer knocked the confidence out of her. "Being at home and at hospital all the time limits your world and everything becomes a big deal - even going into a shop and asking for something." So it was with great courage that she applied for a job at Ovacome, a UK-wide support group for all those concerned with ovarian cancer. Her interview was successful and, having started work again, Lesley now believes "there is nothing I can't do now - or at least have a go at."
-end-
Ovacome - www.ovacome.org.uk For further information contact:

Edinburgh Press Office: Room Ochil
Tel ++44 (0)131 519 4131
Fax ++44 (0)131 519 4140

Opening times: Thursday, 19 June from 13.00-17.00
Friday, 20 June from 08.00-18.00
Saturday, 21 June from 08.00-19.00
Sunday, 22 June from 08.00-16.00

At other times, please contact:
Gracemarie Bricalli, ESMO Media Coordinator:
Tel. ++41 (0)91 973 19 11, Fax ++41 (0)91 973 19 12
Mobile ++41 (0)79 778 5177, gracemarie@esmo.org

European Society for Medical Oncology

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