I'm currently involved in organising what I have been told is the first-ever patient-led event where patients, rather than their representatives, will be voicing their opinion on Government policy and hopefully influencing the future cancer strategy for Wales. The event takes place just a few months before the Welsh Assembly elections next year.
Patients representing at least 30 different cancers will be setting out their pitch in the historic Pierhead Building opposite the Welsh Assembly Building in Cardiff Bay. Each patient will nominate the charity that supports them and on the day those charities will provide a member of staff to support the patient delegate, provide display materials and a contribution towards catering. Every Assembly Member and potential member will receive a personal invitation and we'll ask patients to back this up by emailing their AM to remind them.
The event is in the early planning stage and has already received the backing of the four main political parties who will send their Health Spokesperson to sit on the Q&A Panel. The Velindre NHS Trust have endorsed our event and many site-specific and general charities active in Wales have pledged their support. It's our chance as patients in Wales to have our say on the issues that are important to us with regard to our cancer care, but it's also an occasion to promote the work of the charities that support us.
The idea was born from the need to empower patients and to encourage them to have an opinion about their cancer care. There have been many inspirational leaders in this field such as Dr Atul Gawande in the US, and Dr Phil Hammond in the UK, and locally the NHS, and politicians are striving to engage patients and improve patient empowerment. A few patients got together recently and we decided the experts, the charities and professionals can only do so much and so the next step is ours to make.
We are really beginning to think it's going to be an exciting event. It has already attracted media interest and is likely to have a high profile. Let's hope it has good outcomes for the Government, the NHS and for patients and carers.
If anyone has friends or relatives in Wales who are living with cancer please let them know about our event so we can get as many different cancer sites as possible represented on the day.
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Whippit
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You are more than welcome to attend our event to see for yourself how it works.
I've found devolution incredibly frustrating and disappointing because it's a bit like swimming round in a goldfish bowl where you can't see the other side of the glass. I think I haven't adopted the right approach in the past. It seems to me the general public have generally assumed that devolved administrations will work like the Westminster model where you vote once every 5 years and leave the politicians to run the place.
Wales has its version of the All Party Political Groups (APPG) where the public can get involved in subject specific debates. There are viewing galleries for most of the business of the Welsh Assembly but it can be incredibly stressful because the debate is rarely sharp.
I can't imagine how a patient group could hold an event in Westminster and get every party at a table to answer questions. I've just discovered that is possible in Wales. It's a very new idea so let's see how we get on and whether we have an impact on future policy.
The idea of engaging more of the electorate through devolution is a bit ideological because in reality how many people have the inclination or time to get involved with politics. I've found the only way to have an impact in a devolved administration is to get involved at Westminster and attend events in England to make a comparison, then duplicate that work in Wales. It's exhausting even though my focus over the last 3 years or so has been limited to cancer and the NHS.
I'll post progress in the run-up to the event. It might be helpful to share the experience as devolved health care is now coming to Manchester and will be rolled out to other areas. If patients don't get involved and make their voices heard you may well end up with a very fragmented and inequitable health service in England.
Finding the energy and time to get involved to this degree when you are living with OC, and presumably receiving treatment at times is incredible - well done indeed. We will wait for updates.
I thought the inequality of diagnostics, treatment and access to clinical trials was only for the rarer cancers like ours and have always argued that patients with rarer cancers should be permitted to travel further afield for treatment to a more specialist centre.
Yesterday I met a woman with breast cancer who's discovered treatment options were far better in England too. The poor woman is travelling back and forth from the Heads of the Valleys in Wales to Brighton where her mum and son live and where she has registered an address to access her treatment in England. That has really shocked and upset me to think patients in Wales are going to such lengths to stay alive.
I'm about to have my last of six treatments for third line on Thursday. Bad chemo days are good for thinking and planning. I'm incredibly lucky I don't feel rough for long. Lobbying, writing articles, letters and blogs is a sitting down job. I really enjoy everything I do. It's good I have an NHS address in London. It's only 2 hours by train and that's where most of the meetings and volunteering opportunities are.
South Lincolnshire, but first operation & chemo was via Addenbrookes, Cambridge with op. in Cambridge and chemo (carbo + taxol) at Huntingdon, which is closer to me. The nature of the second recurrence & Addenbrookes response made my G.P & I asked for a second opinion and the op. was at West London Gynae Cancer Centre, Queen Charlottes with a brilliant team who, even to their surprise/delight got out both tumours (again clear cell carcinoma) in the lymph system (one close to aorta & the other snugged up to the renal artery) removed; returned to the oncologist at Addenbrookes for 'dose dense carbo + taxol' (i.e. 7-day regime of one-and-half times normal dose) plus fortnighty Avastin. That ended 2 years ago and at my last test, almost 3 months ago, was holding steady in remission; next test a week tomorrow. I consider myself incredibly lucky to have a GP practice 'on the ball'; their prompt action & support has been faultless. My other stoke of luck is our daughter is a registrar in respiratory medicine in London & also involved in research into trying to improve the dire survival prognosis in mesothelioma; our GPs have known her since she was eight and they worked together on to whom to ask for a second opinion.
I really feel for all of you in areas and with GPs who aren't 'on the ball'; anxiety must be triple or quadruple what I experience.
Re. trials: my oncologist has just said 'there's nothing suitable' so will wait and see when and how it emerges for it's third appearance. I keep my eyes open via googling 2 or 3 times a year and 'store' up anything which I think may be relevant. I will only ever have one daughter but can have loads of doctors so we don't let the cancer take over how we want our relationship to be....but, by golly, she was/is there when needed.
I do get to London a few times a year, so if you are there and I can get down on a cheap day return (or happen to be visiting our daughter & family) I'd value making time for a briefing if you can spare the time.
Hi Lesley It would be lovely to meet up. Next week is my final chemotherapy - carboplatin and paclitaxel. The RM wanted me to have paclitaxel so I'm trials ready. My former hospital in Wales forgot to order it so I had a very large dose of single-agent carboplatin for first line which has had a knock-on effect later down the line in that I am likely to develop a resistance to carboplatin before I might have done and it's also causing analeptic shocks. The RM are dealing with this very efficiently but it's unpleasant.
I can certainly meet up in London as I'm there regularly. I'll send you a PM when I know my schedule of visits. Now I'm on the Arial 3 trial I shall be visiting London every third week whilst the trial continues.
It is handy having someone in the business to help and advise but it shouldn't be that way. Addenbrooks has a great reputation generally even though it's in special measures right now. Good for you for being so discerning. I'm sure it's made all the difference on your remission.
Thanks, Annie. I'll wait to hear your schedule and venue. I agree about 'someone in the business' although, apart from her choice to the GP for the second opinion, it has made no difference to my treatment; her knowledge means I'm not left wondering - can face up to the brutal reality with no doubts or wonderings.
I do hope your last week of carboplatin + taxol goes ok; I was completely 'floored' by it both times and have considerable peripheral neuropathy remaining. Anyway, enough for now. Will await your PM.
Take care and many thanks again.
Lesley
Good for you. It sounds great and should be really exciting. Keep us posted on how it goes. xxx
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