How cancer group is making voices heard

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27/02/2009

From improving off-island accommodation for patients to making information available, local group Toucan acts as a bridge between people affected by cancer and HSSD. Nicci Martel found out how it gets patient feedback straight to the people who run our health service

MANY islanders rely on local cancer services.

Whether as a patient, carer, relative or friend, hundreds of people have had personal experience of the system.  And that puts them in a unique and invaluable position when it comes to improving it.

Recognising the importance of patient feedback, the Cancer Services Users’ Group, Toucan, has for the past three years been an essential bridge between those who use the services and those who run them.
An independent, voluntary forum, it looks for input from anyone who has been affected by cancer and ensures their comments are heard by the Health and Social Services Department.

‘People can access the user group and provide us with information that we can feed back to the service managers, to let them know what patients’ views are,’ explained Toucan’s Karen Leach, lead nurse for the cancer and palliative care service.

‘We are trying to provide a link from patient experience to corporate headquarters.’

Toucan is an abbreviation of touched by cancer and since it was established, the most frequently raised areas of concern have been availability of information and travel and accommodation off-island. Because of the issues raised, action has been taken by HSSD to address these concerns, such as finding better accommodation for patients undergoing treatment in the UK.

But it’s not always easy and there are no magic wands or easy fixes, as Karen explained.

‘I see my role as being able to explain things to participants of the group. There can be misconceptions about how things are and the context of things and a lot of times there’s no easy solution and we have to acknowledge that.

‘We do come up against constraints, but it’s about keeping that channel of communication open.’

Also helping to make the voice of cancer service users heard is palliative care social worker Jo Smith, who recently moved to the island.
As a member of Toucan, she raises issues that concern her clients. She said there were constraints within HSSD – but a degree of freedom, too.
‘It is quite a unique system over here and I think there’s a very, very, good service. But there are always things that can be improved.’

SUPPORT SYSTEM...

‘WE HAVE The Orchidians for prostate cancer and the Pink Ladies for breast cancer, but for people with other types of cancer there aren’t any support groups available,’ said Karen Leach, lead nurse for the cancer and palliative care service.

‘We know there are some people looking for support and we’d been looking at the idea of setting up a general support group for a while, but it was Maisie who pushed it forward on the agenda. She’s helped give us a nudge.’

Maisie Le Page has cervical cancer. She went along to Toucan after mistaking it for a support group.   Rather than discussing ways to improve cancer services, she’d wanted advice and the chance to share experiences.  She suggested a general cancer support group be set up and now one is on the cards.

An open meeting will soon be held to find out what people want from such a group and to determine how it will work.

‘For general, other cancers, you’re on your own a bit. I’d had radiotherapy and then I had a 14-hour treatment that I’d never heard of –
no one else had either, so I couldn’t be reassured by anyone. If there had been a group, someone might have been able to explain it to me and let me know what to expect,’ said Maisie.

‘Going off-island is always stressful and I wanted to talk to someone. You don’t always necessarily want to talk to family because you don’t want to worry them.

‘A support group would just give that little bit more confidence, not just when going away but afterwards, too.’

It is hoped that the support group will be up and running next month.

To find out more, contact the Health Information Exchange on 707470.

MAKING A DIFFERENCE...

Barbara Minta and John Dempster are both members of Toucan.
They believe the group can make a real difference to cancer services in Guernsey and want more people to share their experiences and offer suggestions.

‘There was a period we went through when we didn’t feel like we were achieving a great deal, but now I feel the group is up and running and doing better – we’re doing something good,’ said Barbara.
‘It’s not a support group, it’s an advisory group, but they will take through what we say to HSSD.’

John said there had been some real improvements to the island’s cancer services, including the purchase of an MRI scanner and the provision of off-island accommodation.

‘Travel to the UK and accommodation is the thing that really affects everyone with cancer and we’ve seen changes in that. It was thought that only 800 people would use that MRI scanner in its first year, but there were actually about 2,500. It’s really made an enormous difference.’
Because of Toucan, Barbara was part of a team that was taken on a recce to the UK to scout out suitable accommodation for patients receiving treatment there. Different sites were looked at until the best was found.

‘Information was another area which needed improvement and at the moment we are producing booklets, which will contain all sorts of information to help everybody,’ she said.

The group will also have some input into how the cancer ward in the new clinical block will be organised and

John hopes there will be an information desk that will provide non-clinical information.

‘People go to see doctors and nurses but they need other information too – information that’s not provided through the medical system – and that’s what we hope to do.’


USER FRIENDLY...

TOUCAN is not a complaints group.

It’s a forum that will hear other people’s experiences and perspectives and constructively look at problems within the system.

Neither is it a support group, or somewhere to turn for help and advice.
Rather, it is a user group for anyone who has had experience of Guernsey’s cancer service. It’s open to patients, those who’ve come through cancer and the family and friends of anyone who has had the disease. And it always needs new members.

‘We do want it to become more dynamic. People wanting to join don’t have to come along to every meeting and if you don’t want to join but have an issue you want heard, we do have questionnaires that can be completed,’ said Karen Leach.

Toucan is hoping to launch a website in the next couple of months, but in the meantime, for more information contact the Health Information Exchange at Beau Sejour, on 707470, or email touchedbycancer@information-exchange.org.

There is an open meeting on Wednesday at 7pm in Emma Ferbrache Room in the Princess Elizabeth Hospital. Refreshments will be available.

GEP Article 27th February 2009



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