Do you recognise yourself in the picture above? Or a friend?
As usual, the Westminster Fly-in was bigger than ever, for its 12th annual event. Over 60 MPs were lobbied by the group above.
The night before the Lobby meetings, there was a Reception where all of a sudden you were talking to an MP, who “came over because I just wanted to see what it was about”, or a Lord who told me, “I came in to see what I could do to help”.
Those on the platform constantly congratulated and thanked Breakthrough’s CAN members, and the whole event showed how much their efforts were appreciated.
The TLC campaign
One of the main messages at the event was TLC. For once this wasn’t what we wanted from our medical team, but the campaign message
- TOUCH your breasts. Can you feel anything unusual?
- LOOK for changes. Is there any chance in shape or texture?
- CHECK anything ususual with your doctor.
However, it is as well to remember that many of us suffer with doctors who ‘pooh pooh’ concerns we have over cancer, so there should be information about what patients can do IF their doctor won’t listen.
Georgina Kaim, Senior Development officer, was my main contact in the year leading up to the Fly-In, and kept on supplying me with information and support. As it happened, ‘my’ MP chickened out – he works with the Cabinet and anyone in that position is worried about fall-out from Health Bill. But no worries – we intend to follow up!
At the door to greet us when we arrived was Maggie Alexander and her team. They knew us all by name, and were determined to see that we were welcomed and felt welcome.
Then Maggie, as Director of Policy and Campaigns, set the tone for the event during the first session. From then on we were on an interesting roller-coaster. Workshops followed, designed to take ‘new’ CAN members through what would happen during their MP meeting – and the team made sure everyone was extremely well briefed.
It was buzzing with Trustees who had bothered to turn up and TALK, and various MPs and members of the House of Lords who had come over to see what it was all about (interestingly it was mainly men).
One MP who turned up was James Arbuthnot, M.P. for North East Hampshire, and we talked about dogs (James has several and wants to breed Irish Wolfhounds). As you see he was bravely photographed at another event wearng a pink waitcoat for Wear Pink Day; I only hope the troops don’t pull his leg, as his other job is in Defence.
The party was was hosted by Annette Brook and Stephen Brine, Co-Chairs of the All-Party Parliamentary Group for Breast Cancer, who both gave light-hearted but inspiring speeches.
Next morning the efficient team from Breakthrough marshalled ‘their’ charges off to meet the MPs. In an orderly fashion, they gathered CAN members together, made sure they had a briefing pack and all the literature they would need, and even supplied a memory stick with Breakthrough’s loge. They hoped these would lie around on member’s desks and spread the word! Very good PR!
By lunchtime everyone was well away, talking and exchanging information. I sat between two CAN members who also worked for Kidney cancer, and we spent lunch discussing how, now that most people talk openly about breast cancer, we need to join up with all the other cancers and present a united front to the Minister of Health, and all the politicians.
Currently, there is a feeling that the Dept. Health is happy that cancer charities pursue their own agenda. If charities don’t talk between each other, it is easier to ignore or brush aside concerns. As I found out last month, my local hospital is totally ignoring that we are allowed to top-up drugs with co-payments. I was refused, and bullied, being told that the hospital knew nothing.
But a united front, and a thundering ’round-robin’ letter to the hospital, signed by the major charities’ CEOs, and the hospital would have had to listen.
During the conference
Maggie Alexander was repeating that we have to ensure that Breast Care Nurses aren’t allowed to be made redundant. Perhaps this could be the subject of a letter from united cancer charities, because it isn’t only breast care nurses that are threatened with redundancy, but other specialised cancer nurses as well.
One disappointment was that the session on personalised medicine wasn’t to do with the new treatment paths in the United States. In fact to someone who follows what is going on in America, it was bewildering that Breakthrough isn’t campaigning more strongly for this. After the last San Antonio Conference, doctors across the States declared emphatically that their surgeries were definitely going to be offering this to every suitable patient. Yes, it will make them money – but if tests might avoid side effects such as heart and eye problems, nausea, hot flushes, carpal tunnel syndrome, etc. surely, if the NHS copy this, it will save money?
The All-party Parliamentary Group on Breast Cancer was represented by Annette Brooke and Steve Brine. Brine announced that the Fly-in is like their AGM, and both said how brilliant this event is for getting to meet people and hear their concerns. However, he repeated the same mantra that was being aired at every session, and constantly repeated by Andrew Lansley and David Cameron: according to the World Health Organisation Britain lags behind the rest of the world when it comes to cancer treatment and survivorship.
As a patient I am getting tired of hearing this. We know that we lag behind. So why aren’t we told what is going on in other countries, so we can copy their treatments and hopefully live longer? Having been to France, Germany, Italy, Austria and Switzerland for treatment for different side effects from drugs, for me it wasn’t about expensive drugs or equipment, but the way European doctors take time to go through problems, and use common (er-rare?) sense. Every bit of superb treatment I received depended on this rare sense; not once did I need an expensive drug. But every treatment could be copied so easily, if only there weren’t arrogance from our medics.
Over the teas and coffees, we talked about NHS services already being withdrawn, and how it was going to be up to patients themselves to question hospitals, GPs and the new Commissioning Boards. If they don’t provide the services – how and whom do we ask WHY?
One delegates mentioned that consultants are now starting to ask the NHS to allow them 15 or even 20 minutes for each appointment. Hurrah – let’s all lobby for that! In Europe a ten-minute appointment draws gasps of horror – and the thought of our ‘clinic’ system where patients are seen by a different doctor each time is anathema.
Many patients don’t realise they are entitled to a second opinion, and in fact this is normal in many countries. But when it comes to joined-up thinking, one delegate cited that her hospital had just opened a MacDonalds – now how many calories does a Big Mac contain? !! Yet we are told obesity can be a factor in getting cancer.
And overall delegates were in agreement that Patients must be at the centre, consulted and listened to. But when the Royal College of Nursing and other medical associations are sponsoring conferences, ostensibly dealing with patient care, but NO PATIENTS ARE ASKED TO SPEAK – one wonders if they will ever get it.
One criticism of the Central Hall venue. Breakthrough offered us lunch, but the caterers hadn’t thought who was going to eat this. There were lovely-looking eats, but no labels to show what they contained. My first mouthful of what looked like a fish cake was full of chillie flakes – so after that I had to go round asking staff what was in food. A simple sign listing things like mayonnaise, chillies, spices, etc. which drugs don’t like would be helpful.
Still, at least after the Westminster Fly-In, MPs have got it!