But Macmillan’s conference preaches

~ to converted

Two hundred Patients, Supporters, Carers and Staff gathered at this year’s Cancer Voices Conference, held at Gatwick.  It’s Macmillan’s 100th anniversary, so expectations were high.

But many delegates had attended before, had found their feet, and were wanting to get out there and get active to improve services, particularly for patient services.

The blurb on the Macmillan website said delegates could

•     contribute to discussions, debates and give your input on how we can improve cancer services
•     meet other people who have had similar experiences
•     hear about the future direction of Macmillan
•     find information and resources.

But instead, we felt that sessions were mostly about fundraising;  many of us have been doing this since we were in our teens – but now need more ‘meat’ to get our teeth in to, to be able to campaign on ‘how we can improve cancer services’.

One friend emailed to say, “where were the Forums?”  Instead, there were many sessions designed to give volunteers support in fundraising, etc.  But some of us wanted to use the time and hotel services that Macmillan were paying for, to discuss actively carrying campaigns forward, what type of help Macmillan could best provide (bearing in mind cancer care is going to change radically with cut-backs), etc.  What action plans we could get our teeth into once we had left the conference?

Highlights for me were Mitzi Blennerhassett promoting a survey on what we think of medic’s communication skills (not a lot), and the chance to catch up with old friends.

Stands

There were some new stands, including one that highlighted the role of Hospital Chaplains, and how they aren’t just there for prayer, but are a very effective voice to help patients bridge the gap between medical treatment and finding information.

I remember the Chaplain at the Royal Marsden was more help to me, than many professionals, as he had been on the Ethical Committee that approved Tamoxifen.  Whenever I got another side effect, he was able to look these up, and confirm I wasn’t going mad – what was happening  had been noted during the clinical trials – and then ‘forgotten’.

Standing by the NCAT stand was Mitzi Blennerhassett, carrying out a short survey.  This was on patients’ and carers’ views about the need for health professionals, involved in cancer, to have communication skills training.  We only had three places on the form where we could write in comments – there should have been pages!

The stand also promoted a book which features on the Connected website: ‘Nothing Personal, disturbing undercurrents in cancer care’, written by Mitzi, and published by  Radcliffe Publishing. This patient narrative shows the consequences of poor communication in healthcare and raises many issues.£14.99.

Discussion sections throughout the book look at what needs to change, backed by research references for better/evidence-based practice.   The author was dismayed to find that a copy of Nothing Personal, lying among promotional material, disappeared on Saturday morning. Many of the stands offered free pens, writing pads and other materials, and the book may have been taken by someone who thought it was a ‘freebie’. If you have any relevant information, please get in touch with Mitzi on b_mitzi@yahoo.co.uk or telephone: 01653 628369.

Overall impression

So much of the conference was just going over what has been discussed in previous years, and it seemed that those present fell into two group

• Carers and patients – they were enjoying meeting others and talking about their problems.  It was wonderful for them because it gave them a break
• ‘Experienced’ patients, who know the system, and wanted to get on with campaigning for better cancer care.

It would have been helpful if sessions focussed more  on what would be reasonable for patients to ask, what services should be provided, and how Macmillan could help obtain these.  Many said they would have liked more serious discussions to talk about campaigns for different issues  and to have had sessions with Macmillan’s senior people to actively get on with campaigns.  If we had had some actions to take forward, we would have felt time was well spent.

e.g. patients who have Osteoporosis as a result of being on cancer drugs, are trying to get hospitals to set up similar exercise classes to those that patients in Europe receive, to help reverse the condition.  These exercise programmes use equipment such as wobble boards, bouncers, treadmill etc.  Simple stuff in every hospital gym – but hospitals turn a blind eye to the need.  But backing from Macmillan would soon get them using physios and equipment towards greater benefits for us. For many with osteoporosis, there e a bleak future with almost inevitable fractures;  my local hospital assures me “WHEN (not if!) you get a fracture, we can deal with this” – costing £12,000 upwards?

So I went to the ‘Benefits of Exercise’ workshop to learn about the latest reseach on exercise for cancer patients (and there has been a lot recently, both in UK and USA).  Instead of being able to ask how our local campaign for osteoporosis exercise classes could get help, we were given exercises to do – which were good for our health, but didn’t provide any plan of action to get this – or any other type of rehabilitation – excercise available to us.

In many of the workshops  we had to fill out A1 sheets of paper with our thoughts – but we did this last year, and the year before, and STILL we aren’t getting ‘world class’ care.  One fellow delegate said we could have filled in a computer-readable sheet with things that were important to us before we arrived;  then during the conference we could have been told what majority wanted, and how we can campaign for this.

Perhaps next year there could be a session where we talk to the Policy team, and actually come away with a plan of action?  There are signs already in many areas that the Health and Social Care Bill is extending waiting times, patients are being denied care, drugs are again in short supply, etc.  Worst of all, after Macmillan campaigned strongly for Co-payments,  all has been forgotten.  Why no session to repeat what Macmillan campaigned for with these co-payments, and give out a laminated sheet we could thrust under the noses of commissioners for hospitals and doctors;  we already need this in my area (London).  When I wanted to pay extra to be given an infusion specifically designed for cancer patients, Chelsea and Westminster Hospital

• refused to discuss co-payments, saying they didn’t agree with them
• when I said that Alan Johnson had promised Macmillan we could have these – ignored his decree
• then said if I continued to ask for this drug I would be struck off and would have to pay to go privately.

Considering how much time and money Macmillan spent on this campaign, it would have been helpful to discuss what is happening now.  Perhaps we could submit ideas for what concerns us, and Macmillan could pick a ‘top ten’ for workshops next year?  With the proviso that if we raise the subject, we are expected to go ahead – with Macmillan’s help.

So next year – let’s harness the energy that was in the conference, and get out to campaign effectively.  We need to follow the type of lobbying that is seen in the USA, because under the Health Bill we are going to need this.

Two days later the Breakthrough Breast Cancer conference showed how it should be done;  60 MPs were lobbied by constituents, and 40 peers turned up during the event.  And the conference team made sure we all had plans of action to continue lobbying – so we felt we were really contributing to improving cancer care.