hya !
IS this the westminster fly in you are involved in ?? if so I will see you there !! Lets hope we can make a difference x
Hi Ladies,
You are ALL so amazing! It is such a blessing that we can share experiences like this and inspire each other.
Apologies for not yet responding to you all individually. I will do very soon. I would just like to let you all know how humbled I am by your responses, your support and kind words. You have all raised key issues and I will take them forward for you.
Thank you all - Big Hug!
Lots of love
Nicole
xxxx
Hi Smallstar,
We definitely CAN make a difference!
No this is for the Party Conference that I am attending next week however I will be at the Westminster fly in next month! Will be great to see you! xx
Hi,
so happy to have found your thread. My concerns lay in two areas, the first being…the gov are cutting health service budgets on plastic surgery, are the general public aware that delayed breast reconstructions come under this heading in many areas
second. The cuts are also going to include funding on breast cancer research, what a grave error and worry for us all ,and all our children.
I think if this happens the whole group of breast cancer sufferers, survivors , 46.000 should march on downing street.
good luck with your conference x
Hi Gloss
Is this only for England?
Jeannie
Hi Jeannie,
No - UK wide. Any feedback is welcome.
Thank you
Nicole
x
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Hi Nicole,
I think it’s great you have the opportunity and have taken the trouble to look for feedback to help others have their say.
In light of Jeannie’s question though, I would like to clarify that Westminster MPs have no influence over what happens in Scotland. Funding for the NHS in Scotland is allocated by Scottish Government. It’s true that the amount they have to spend will be influenced by Treasury but how much is attributed to our health budget and how it is spent is decided entirely by Holyrood.
Best wishes, Jan xx
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Dear Gloss
My understanding is as JanB has so rightly said and Scottish Parliament is responsible for Scotland. However, I’m sure the issues I have are applicable to anywhere in the UK.
I was four years misdiagnosed. Despite asking my GP on three occasions to refer me for further investigation she refused saying I had nothing to worry about. I put myself into the system at age 50 and was diagnosed with localised advanced breast cancer. I have been campaigning ever since I was able. I managed to get armpit lumps into the Scottish Referral Guidelines (SIGN) but I cannot seem to get anywhere with better GP training. To make things easy I list my concerns:
- Women under age 50 need to get better recognition. Breast cancer can affect anyone at any age and the sooner this is recognised the better.
- Guidelines are only guidelines, and must NOT be set in stone. Many breast cancer symptoms are not covered in the Guidelines. GPs must listen to their patients and use their clinical acumen. I could go as far as to say, we should be able to self-refer as we know our own breasts better than any GP.
- GPs need better breast cancer training. An average GP practice will only see approximately one new case per year (as quoted to me by Macmillan, Breast Cancer Care and Breakthrough)and many do not specialise in breast cancer. In my own particular case, I appear to have known more about breast cancer than my GP but it’s not my knowledge that gets me into the system for further investigation.
- The same standard of care should be available throughout the UK.
I lived in very beautiful part of rural Scotland but my care at GP level was shocking. So much so that I sold up and moved away.
You may be able to do very little on the above. However, it has helped me to let you know of issues I am campaigning about in the hope that those that come after me will benefit.
Best of luck.
Jeannie
Hi Nicole & smallstar
I was invited to the westminster fly in but unfortunately can’t make it as I am working that day. Thank you so much for asking for our opinions for the fly in and for your political party conference. You are right we CAN make a difference. I am an avid fundraiser since my diagnosis and I am forever telling people that even a tea party that raises £25 makes a difference, if 1000 of us all raised £25 then this really makes a signficant difference.
Anyway I digress!, I have been treated for primary BC, I wont go into details but it was the whole works plus additional complications. The thing that concerns me most about breast cancer treatment is not primary BC but secondary. I feel deeply distressed at NICE declaring new targetted therapies such as lapatinab and Avastin as being too expensive and not offering enough length of life to advocate funding. The whole postcode lottery is a disgrace and it pains me to think our european counterparts are given new treatments as and when they become available and based on clinical need not postcode. The UK still trails behind the rest of europe on survival statistics and the accessability of new drugs is a large part of this discrepancy in survival statistics.
PLEASE PLEASE PLEASE express concern on how those with power in their ivory towers can deprive women of these drugs which in turn are depriving children of their mothers.
Thank you ladies … xxxxx
Hi,
Thanks for this opportunity to air views.
I agree with eal69eal re the funding of new drugs - it shouldn’t need a media campaign to enable someone to have the drugs to prolong their life and this applies to all illnesses not just cancer. I know it is a very fine line to tread but some of the reasoning behind decisions needs looking at and I believe things need to be examined in much greater detail. I saw a sign in my chemists last week that was asking people to consider whether they actually need all the items they are ticking on their repeat prescription forms as last year in this small area alone, £2.5 MILLION pounds was wasted on prescribed drugs that weren’t taken (and that’s only the ones they know about). It appalled me, especially when lots of these if not most of them would be for people on free prescriptions. Sorry to rant about this but it is my big bugbear and think how much must be wasted nationally and where that could be put to better use.
Having said all that, the care I’ve had from the surgeon, oncologist and cancer nurses has been second to none. I was seen within a week of GP referral even though he thought I had a cyst and had started chemo 2 weeks after seeing GP as it obviously wasn’t a cyst and it turned out I had bone mets and spread to a lot of lymph nodes. If I’ve had any queries, I’ve always been able to ring oncology and speak to the nurses there who have been fabulous. They need more support and recognition.
The GP care since then has been non-existant re any support for me, not that I’ve needed it from them but it would have been nice to have been asked. Example - I went in for a prescription written by oncology and the doctor at the GP surgery asked ‘Oh do we know you have secondaries?’ - 2.5 yrs after diagnosis!!! I think they should get more training on how to deal with bc - perhaps sit in on surgeons/oncology appointments once in a while. I know I’ve kept well but really…I even had to argue to get a flu jab this week and that’s only if they’ve a cancellation.
The bcn set up has been non-existant too. They were there at the original appointment and if you ring them up they are helpful but I’ve never had one ring me just to see how I’m getting on or as a follow-up with results etc. The emphasis seems to be on the patient to do the legwork - perhaps I am being unfair as I haven’t really needed them, mainly thanks to this site.
Lymphoedema wise I’ve been very lucky as I had the start of a frozen shoulder after surgery, was urgently referred to physio where the nurse was again fab and was able to spot lymphoedema in arm and shoulder and was able to treat me before referring me on to the lymphoedema specialist. I know this is probably a rare success.
I don’t know that my ramblings have been of any use but I feel better for airing some of my annoyances with the wasted prescriptions and poor GP communications.
Good luck and many thanks again for representing us.
Thank you so much ladies,
I just want to say again that I am deeply humbled by your support and your responses. I am so honoured to be representing your views. Currently I am working through each of the responses in preparation for my meetings with the MPs & NHS reps. I feel so empowered ladies and so blessed that we can join together to make a difference.
We are all so unique and united through our experiences - a powerful voice indeed!
Best Wishes,
Lots of Love
Nicole
xxxxx
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The service provided by the Hospital etc have been excellent so far, maybe a little too long witing for “extra scans”
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As above, the local hospital have a firly new Ncmillan cancer centre and it saves lots of people travelling miles to another centre,.
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Not sure as things seems to pretty much run very well, the hospital seems to be short of just one type of scanner than is needed regularly so people have to travel about a bit and wait longer
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No, not yet
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I think there are targets and we seem to have been seen very quickly from, initially in the doctors within 2 hours, 2 weeks to hospital, 2weeks results, 1 week operation it seems to run pretty well for such a vast bureaucratic organisation.
An extra point that Meggars has brought up and is a very “controversial/hot” topic at the moment is hospital parking charges, i don’t necessarily agree that it should be free for cancer patients only it should be FREE to all, no one wants to go to hospital by choice we are on our 4th appointment this week and the added costs are mounting up and my mum had the same issues earlier this year going for daily radiotherapy, i’m afraid the hospital parking costs are more than my childs school dinners each week and people are having to make tough choices when they are ill which shouldn’t be happening.
I was going to be writing to my M/P about it before and this week has swung it he really is going to get it in the neck now.
First would Just like to say thanks for helping towards bc care.
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What were the good and bad aspects of your experience of breast cancer treatments and services in your area? Are there any examples that you can think of where something was done particularly well or could have been better?
answer – My gp very pleased with fast service and hospital for running test within days but 3 weeks wait for results was hard.But all team were helpful and kind people.Lots information and booklets given to read helped.But chemo found not so nice being in mix room with men and women and everyone see and hears all.And being weight in front everyone not good.but otherwise staff good but would of like more privacy in treatment. -
Overall, how satisfied are you with your treatment and care, as an individual or interested party? How well do you think your local breast cancer services meet the needs of the local patient community?
answer – very well -
What are the main improvements you would like to see made to breast cancer services?
answer — single sex units and more privacy on treatment. -
Have you worked with your GP surgery, breast cancer unit, hospital, Primary Care Trust or Cancer Network to suggest improvements to local services? Does your support group have any plans to do this in the future?
answer – have not yet but may have to if it helps -
Are you aware of any specific national or local targets that breast cancer services in your area have to meet? Do you know if your local breast cancer services are meeting them?
answer—dont know
Plus esa benfits need updating asap so many people losing benfits im still fighting keep mine gone to appeal not once ask me if i got cancer r in treatment and its effects are you coping etc. your ask can you eat drink talk hear dress wash walk talk etc so unfair to people with cancer being called up the word cancer say it all so sorry about my grammar Jane x
Hi Ladies,
Apologies for not being in touch sooner - it has been quite a crazy couple of weeks and my feet have not touched the ground! Another busy week to go and then things calm down a little. As you know I attended the Labour Party Conference and it was a brilliant and successful experience. I will do a proper update when I have the chance to sit down! Hope you are are doing well.
Lots of love & hugs to you all.
Thanks again for your support - it means alot.
Also today marks three years! Feeling fantastic!
Nicole XX
Nicole,
Thanks for popping in to let us know whats going on - looking forward to your update when you get the time.
Congratulations on the 3 years!
love Julie x