Firstly, with regard to the Cyberknife campaign. I have just done an interview with Laura Donnelly of the Sunday Telegraph, and they are sending round the photographer. Fortunately, I was contacted for help, by someone who has recently been denied funding up in Scotland, so Laura has also been able to get an interview with them to demonstrate how desperate the situation is. Hopefully, the press will explain how disgraceful it is that the NHS have spent millions on acquiring Cyberknife, but only 28 PCT’s will fund patients to use it. In the South East three NHS hospitals have bought Cyberknife but not a single patient is Sussex, Surrey or Kent can use it.
Secondly Breast Cancer Care have kindly organised a focus group for stage 4 BC patients, and their partners. I am going up to London with my husband tomorrow to take part in this, and wonder if there is anything other stage 4 people would like me to mention. I guess it will focus on our experience of the health service, if it can be improved etc. This is a great opportunity for us all to work together to improve things.
Thanks so much for sharing this news with us Lemongrove - excellent news that you are getting publicity for Cyberknife and difficulties in accessing it. Do you think the interview will be in this Sunday’s Telegraph or a later one?
Also great to know that BCC are gathering info to support stage 4 BC patient needs. Updating the medical profession on the diversity of treatments such as Cyberknife and Tomotherapy would be a priority for me; also closer links between Oncs and other medics so that when we, for instance, need orthopaedic ops for bone mets there is a clear link between Oncology and Orthopaedics - my Onc didn’t even mention my orthopaedic op in my report to my employers Occupational Health and progress with that is never mentioned in Onc appts… Links with maxilofacial over Zometa seems better organised. It would help patients to feel there was as overview of their treatment when it goes across hospital departments, in my view.
Hope tomorrow goes well
Fran
Lesley,
Great stuff! Well done!!
I agree with Fran re links between depts etc, also better support ie most secondary women dont appear to have bcn support or any key worker.More consistency with medics would also help, how can you have confidence of best treatment when you see a different Dr each time.
Sure ther are other issues just can’t think at mo. Good luck tomorrow and thanks for fighting our corner!
Julie x
Hi Lemongrove Well done, will look out for the Telegraph. I did sign the petition, an earlier post, am really keen to support this.My local PCT do not fund Cyber Knife. Had rads at Mt V and I know there is a Cyberknife there so very keen to help J xx
Excellent news. At the focus group tommorow would you also bring up the need for written treatment plans, that outline measures to monitor disease, the frequency of monioring and potential options when disease progresses.
Sorry if this is a bit too late but just catching up. As the others have said, many thanks for doing this for us all. Will be interesting to read the article when it’s published.
Re the focus group, I too agree with the other ladies on here about info, proper liaison between depts(although surgery and oncology appear to have been fine in my case) and support - or lack of - from bcn for mets people. I rely on my onc and the nurses giving me monthly drip for help and advice. No communication whatsoever from bcn. Also agree with AlexD’s suggestions.
Off to bed now so hope this has reached you in time.
I’m leaving for London at about 1pm today, so if there are any more points please post, and I will print them off and take them with me.
The points that have been raised are pretty much what I think as well.
thanks Lemongrove
Agree with points from other posters - also issue of variability of holitic support - some areas seem well catered for with Maggies Centres and Cancer support centres but other patients have little support. Seems very hit and miss and dependant on voluntaryorganisations like the Cavendish centre in Sheffiel and Maggies centres at other places.
Role of a key worker and sense of overview of treatment is really important - seeing a new doctor on every visit does not give a sense of continuity when all they can do is read the notes that are passed on and a relationship with trust is difficult (no almost impossible) to build up. Leads to great sense of vulnerability that is not helpful.
Fran
hi Lesley
picked this up too late to add any thoughts but i think most posters had pretty much covered most of my concerns.My problems were by coming to this as a sec person and never having had any advice as a primary sufferer which meant basically no advice at all.As others stated no key worker,no advice and only a verbal plan.Had to keep asking for copies of any written reports which was hard work when going through treatment.I now get these from my new onc automatically so obviously things vary by area,so no standard treatment seems to be a problem.There is however no holistic backup that I can find in this area.
Thanks for fighting our corner and hope you had a good meeting.
Just to report a bit further.
Firstly, the photographer from the Sunday Telegraph is coming tomorrow, so hopefully they are going ahead with the Cyberknife article in the next week or so.
Secondly, went up to Breast Cancer Care Charity this afternoon, and had a worthwhile session. Basically BCC are working to raise the profile of stage 4 cancer. They have of course campaigned to ensure that those with advanced cancer are recorded (so we are visible), and now they want to develop the living with cancer day (which thy stated last year and is about highlighting stage 4 cancer and raising awareness, and strengthening the lobby), and create a guide with info that might not be available elsewhere (e,g.how do you get a second opinion, or what do you do if you are refused etc).
We were just a little focus group, to get a general idea, but it will be an ongoing consultation, that all members will be involved in.
I met you today at the forum, had to rush off but wanted to say thanks for your participation and all the campaigning you are doing re. Cyberknife. From tiny acorns mighty oak trees grow… I’m always inspired by the women I meet in these groups and the selfless work that they do to ensure a better future for those dealing with secondaries.
Just want to say hello Alison, and how nice it was to meet you all. I also found it very inspiring to hear the experience of others. The one thing I forgot to ask is when the living with BC day will be this year?
Just wanted to say thank you very much for going and putting our views for on our behalf (very succinctly I’m sure) when we can’t always get to the groups - in my case because of the distance away from the venue. It all sounds great.
Thanks for the update Lemongrove and for sharing info with us. Really pleased that both you and Alison found the focus group useful - and delighted to know that the profile of secondary is strongly on the BCC agenda.
Fingers crossed that the Telegraph Cyberknife publicity/article goes ahead
Fran
Firstly, sorry Lucy, but I meant to say when is the Secondary Breast Cancer Awareness day ?. The reason I said living with breast cancer is because of what was on the poster promoting the event.
Will it be October again?
Secondly, The Sunday Telegraph are hoping to do the article about the Cyberknife funding issue this Sunday. They did loads of photo’s of my husband and I in the garden. It’s quite funny really, because we’ve recently had building work done, and our garden looks like a rubbish tip, so it’s going to look like we live on a rubbish dump.
Secondary Breast Cancer Awareness Day should be on 13 October again this year, to fit in with the Global Metastatic Breast Cancer Awareness Day, which has been growing in the US over the past few years. (You can see a bit more about the US day here mbcnetwork.org/)
Will look out for you on Sunday Lesley - saw the article on the web and wondered where the paper had put the article this week? Great to see you so prominent on the web