Macmillan hosts Cancer Voices Conference
160 cancer survivors recently met at a Gatwick Hotel, and talked!
I often wonder why the organisers bother to invite speakers, as we always have so much to say when we meet up – but when they managed to get us to shut up there was an excellent programme to listen to and watch.
One of the speakers was Giles Long, MBE, seen here on a victory parade, who bought a very interesting conference to a resounding end.
So what did we talk about?
Summary Care Record (SCR)
For me, the most interesting session was on the SCR. I only went in to the room because the session I had booked was cancelled, but the presenters, Andy Carr and Steph Peart, were informative, interesting, had a lively sense of humour, were honest and totally won me over explaining exactly what the SCR was all about.
Andy explained that the data the SCR would hold would contain
- details of my medication
- any allergies.
Anything else that I thought necessary to know could also be included, but nothing I did not approve would be allowed to be included.
The SCR is an electronic record that will be freely available to medical staff all over Britain, if they need to know what drugs we are on. Theoretically if we are injured and unconscious in an accident, everyone from Ambulance staff onwards during our treatment path will be able to access this information.
Nothing can be recorded WITHOUT our permission.
NOTHING that we don’t want to be recorded will be recorded on our SCR.
Three months ago I had opted out. Our local hospital’s IT system is so bad you have to check your hospital prescriptions very, very carefully, and the thought of relying on a similar NHS IT system was frightening.
Now, I am re-thinking.
So what will/can be included?
- Basic details as mentioned above
- Drugs/medication I am on, and quantities
- Any medical history I want included (diseases, conditions that might affect treatment, previous operations etc. but only what I choose to have included)
- Way to treat me e.g. if I have had a certain cancer and need to be laid in the recovery position, when unconscious
- And anything else I think important
1and 2 are mandatory; 3 – 5 and anything else will be up to me.
I think best way to comment on how good was the session is to say that I will be contacting my NHS GP to say that I DO want to be on the register.
One word of warning. Just about every wage earner in Britain contributes around £2,000 pp to taxes that fund the NHS. Yet in typical NHS ‘dog in manger’ attitude, if you only have a private GP, we were told they aren’t being informed about this – even though private patients pay their taxes too.
We had a very user-involving workshop, and I felt sorry for the presenters, Sonya Peart and Noeline Young. After explaining where the Survivorship initiative has got to, they gave every table in the Workshop copies of forms to look at, and asked us to comment. Comments were uniformly bad, and at the end of the session these forms had been universally panned.
Survivorship had been a recurring them throughout the speeches in other sessions, and was at the top of everyone’s agenda. Yet the NHS initiative grinds along, involving ‘consultants’ who can write these questionnaires, but very little involvement from cancer survivors. As one delegate said, “we are invited along to tick the boxes, but because we aren’t paid, they are not going to listen to what we say”.
Involving Volunteers – and paying them
I got the feeling that everyone in the audience had volunteered, and we had inspiring talks and comments from those who had given up their time to fund raise enormous amounts. But in the current economic crisis, household bills such as food and fuel are rising rapidly, and survivors aren’t able to give as much time as they used.
In one session we were talking about using Patients as Advocates, and a delegate asked “why can’t survivors with acting skills be employed for medical exams, instead of actors?” Any actor would work to the usual payment structure, so it wouldn’t cost any more to employ survivors, yet trainees would get a much more realistic examination, and survivors could feel they are being helpful, and get a fee to help with fuel and other bills!
Perhaps Macmillan nurses in the Community across Britain could report back on which hospitals have these ‘live’ exams, and Macmillan could write to the authorities to suggest this?
In the same session, another delegate had suggested that whilst he was having radiotherapy, he video-d himself. This video would then be used for training staff and induction before sessions for patients. There must be lots more survivors who have experience as professional photographers, who would be able to offer this. Again, this could be something the photographers amongst us could suggest to local Macmillan organisers. Each NHS hospital has funds available for setting up this type of information, but so often it is outside companies with no experience of cancer who do the filming – and get the fee!
As a journalist I know that these videos and CDs flood my inbox; most are produced by commercial companies, paid for by drug companies, PCTs, Trusts, Hospitals etc. They have budgets – so get on to them and suggest yourselves!
The conference ended with a fascinating speech from Giles Long, MBE, a Paralympic Gold Medalist. After cancer as a teenager, he got on with life, won sporting medals, and now talks to companies and groups about his experiences.
Giles reminded me that I put up a little story about the Iditarod dog sled race that runs across Alaska every March for ten days. This year the favourite was a cancer survivor, and one of major women competitors had had a double mastectomy, and kitted her 16-dog team in pink bootees to celebrate survivorship. The dogs aren’t sissy, but running 1000 miles on icy track cuts up their pads.
Before I left for the conference I had looked at the web stats (it’s fun to see which new countries are coming online – this month it was Trinidad and Tobago, Angola and Kazakstan). And, six months later, people are still hitting the Iditarod story telling about cancer survivor Lance Mackay’s record win.
I am looking at increasing coverage next year and trying to involve teenage and children’s cancer charities. Sport and cancer make interesting and inspiring stories!
Venue: am sure The Gatwick Hilton cost a fortune, because of the location. The staff were excellent, but there was talk of massive overcharging if you used the room telephone, rooms not ready until late in the afternoon although people check out from 5 am as it is an airport hotel, problems with lights and heating in the rooms, etc. Perhaps next year Macmillan could analyse travel expenses for delegates, and get some clever logician to work out where in Britain would be cheapest for train costs, and book into a country venue. I know York is the easiest place to reach by train from venues in UK – but don’t know how many delegates come from north of Watford.