Breast Cancer - Please help me to make politicians listen!

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Dear All,

I really need your help to make a difference!

I will be attending a Party Conference at the end of this month and will have a number of opportunities to meet and speak with a number of MPs and senior NHS representatives about real experiences, what they can do to make improvements and also discuss the need to protect the services we presently have especially with cuts on the horizon.

I will act as a voice for patients and those affected by Breast Cancer at the Conference. It is a great honour and a role I take seriously. I have personal experience of Breast Cancer as I was diagnosed in 2007 aged 27, and at this time I used the Breast Cancer Care forums. I am delighted to say that I am well and feeling ready to make a positive difference in anyway I can.

The questions I need help with are as follows:

  1. 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?

  2. 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?

  3. What are the main improvements you would like to see made to breast cancer services?

  4. 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?

  5. 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?

Please answer any questions that are relevant to you. Any feedback you can give me will be extremely valuable and very much appreciated. You can post here, or send me a private message. If you prefer to email me, let me know by private message.

Thank you very much!
Best Wishes
x

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Hi Gloss

This is very interesting and I will get back to you when I have time to answer your questionss later. Meanwhile bumping it to the top so hope other women respond.

Anne x x

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Hi Anne,

That’s great! Thanks so much for your support. Really appreciate any feedback you can give. I look forward to hearing from you and other women.

Best Wishes,

Nicole

x x

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bumping

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Will also get back to you once I’ve had time to read and think through properly.

Sandra x

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I’m terrified that services will be cut and less funding available for treatment.

I cannot fault our services in Lancashire but it doesn’t make the knot in my stomach go away that this will always be the case. On top of the fear of having cancer there’s also the fear that you might one day be told “sorry” due to lack of funding.

Where cancer is concerned it seems we have to fight to get the latest treatment, whether it be due to government funding or approval from nice. Sorry not very up to date with all the latest info, but hopefully you’ll get the gist of what I mean. Herceptin, is an example; the number of people who ask me will I get it if I need it? I’ve been told Yes, but it doesn’t stop you feeling scared and we shouldn’t have to worry about whether certain treatment being available when we have to deal with the worry of cancer too.

Hope this is of use and bumping up to top too

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Hi Nicole,

I’m aged 35 and currently undergoing chemotherapy treatment for breast cancer (had lumpectomy first) and having bi-lat mastecomy with immediate recon in Nov as we found out that I have BRCA1 so no point bothering with radiotherapy in my case. For further details on my cancer journey my blog is here: community.macmillan.org.uk/blogs/like_mother_like_daughter/default.aspx

To answer your questions:

  1. 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?
    Not sure I’d describe any part of the experience as ‘good’ but I think I know what you mean.
    Good:
    a. I’ve was provided with appropriate drugs for the side-effects of chemo immediately rather than waiting to see what happened and then being prescribed them as has happened under some other NHS trusts.
    b. District nurses coming to give me 10 days of GCSF injections after each chemo cycle to help prevent any hospital stays. Again, under some other NHS trusts I gather that people may not get these, end up in hospital with neutropenia and need antibiotics. Also, where they do get injections often they have to do this themselves. I reacted badly to chemo so wouldn’t have been in any state to do injections myself and feel for those that are in that situation purely because of where they live.
    c. BCNs have been brilliant.
    d. The reserved parking are for cancer patients has made attending appointments far less stressful as trying to park in the regular hospital car park frequently has waits of an hour or more.
    e. The multi-disciplinary team meaning a joined up approach to treatment is a good thing in my book.
    f. Recording the consultations on CD so I could listen back to them afterwards was really helpful as I couldn’t absorb all the information at the time it was being given.

  2. 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?
    a. I am very satisfied with my treatment and care. All the staff throughout my cancer journey have been great. To name but a couple of examples: 1. GP putting me in a separate waiting area whilst undergoing chemo to keep me away from potentially infection people. 2. Staff taking responsibility for communicating information to another medical team at another hospital, i.e. removing stress that would be incurred if I had to do it myself whilst dealing with treatment.
    I think I am VERY lucky to receive the treatment I have which is clearly (having spoken with women from across the country) based upon where I live; i.e. postcode lottery. If it weren’t for that I may not even be here now - a very sobering thought :frowning:

  3. What are the main improvements you would like to see made to breast cancer services?
    a. I would like to see a consistently excellent level of care for breast cancer services nationwide to give all patients the best chances of survival possible - not just in pockets of the country.

  4. 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?
    a. None - they have been great.

  5. 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?
    a. I haven’t read the latest report but I know they were exceeding them in previous years.

I hope that this helps you. If you need any further information PM me.

All the best,

Mia

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Hi Nicole,

I am 47 and was dx October 2009 and had SNB (2 nodes), WLE and rads. Following my dx I transferred to private treatment covered by my insurance so I can’t comment on the NHS except for a couple of aspects.

Firstly, the support that I received from my GP which was amazing. I would not have got through this experience without him. From some of the postings on these forums, it is clear that this is not always the case and I have been very lucky.

The other main area of treatment that I believe needs more focus and funding in the UK is in the diagnosis and prompt treatment of lymphoedema. I have lymphoedema in my operated breast (not my arm) and neither my surgeon, nor my oncologist, who are heads of their teams in the local NHS hospitals, were inclined to recognise it or realise that it could be treated and improved. Finally my BCN persuaded my oncologist to refer me to the specialist clinic (NHS) and I have received treatment and advice, but I have also realised that this facility is woefully understaffed. My last appointment was cancelled at the last minute due to a problem with the building and my rescheduled appointment was for 2 months later! I believe, from these forums too, that there are many more women who have undergone treatment for breast cancer, who are not being referred due to lack of knowledge of their medical team, and those who are referred are waiting far too long for treatment.

Best of luck with your efforts at the Party Conference. I have had some email correspondence with our local MP who appears to be listening, but the more noise that can be made at high profile events, the better the chance that they can be persuaded to make public commitments to protect and improve services.

E x

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Hi Gloss
Will PM you when I’ve had a chance to read properly and co-ordinate the thoughts!
C

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Sorry this is brief but all I can say is I was so happy with how I was diagnosed and treated. I was made aware that the target was 2 weeks from diagnosis I would be treated and that is what I think should be the case for every woman diagnosed with bc.

Love
Maude xx

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Hi Ladies,

Wow what an amazing response. I truly thank you all so much for your support and for sharing your experiences through your posts and messages via inbox. Means alot to me. I will respond to each of you individually very soon.

Wishing you all the best

Lots of love

Nicole

xx

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Hi Nicole, Me:DX BC 1996. DX secondaries 2010

Q1…
GOOD, My GP has been excellent, he has pushed for all my appointments with the hospital, personally phoning the relevant depts which on one occasion took him 30 mins and had a knock on effect to his surgery. (other docs at same surgery not as good).
BAD,Waiting times for tests and follow on apps.At the moment,from my GP visit, it has been 3 weeks and I still do not know when my results and follow up app will be…very scarey and difficult to deal with on a daily basis.

Q2…
My treatment & care is still on going. I have found that this is very much dependant on the individuals involved.ie; my consultant surgeon is excellent at giving his time and information, whereas my onc is very difficult to talk to, she doesn’t give much info and I have to constantly ask her anything I need to know.This was the same with the chemo nurses, some were good, others not as good.I also feel that as a patient with secondary bc I do not have a dedicated contact to whom I can turn to.(My hosp does not have BCN for secondaries, although I think some hospitals do).I also find that my route to my onc is long winded, GP appointment, referral to onc, possible appointment with onc or onc sends letter to GP, meanwhile I’m left waiting.

Q3…
I would like to see one stop clinics for testing, results, appointments etc. all done on the same day.This would help with the dreaded “waiting” game.I would also like to see an improvement in secondary cancer info & care.

Q4…
I have spoken to the Macmillan counsellor affiliated to my hospital re some of my concerns.

Q5…
Not aware.

COMMENTS:

My mother died of secondary bc of the liver in 2002. Her GP never referred her, despite him being her GP when she had her primary bc dx.My family (and my mum) had an horrific experience trying to get treatment for her and unfortunately this is always in the back of my mind going through my own secondary bc journey,(same hospital). I am very aware of the failings in our system, hence my comments about some treatment / care being dependant on individuals, but why should I have that as an added worry?
I am finding much of this journey hard work, for which I do not always have the energy , regarding appointments, test results, information,etc. It would be wonderful to have someone who has all my information at their fingertips instead of lots of people with fragments of my info.I am always trying to chase up apps etc. and end up making 2 or 3 phone calls before getting hold of the correct person.
Budget cuts are a terrifying prospect and as a patient it obviously worries me. I have a few views on this, but do not feel this post is the place to mention them!
Nicole, I wish you the best of luck and also thank you for caring!

Sandra x

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Hi Nicole

Having just undergone the full set of treatments – surgery, chemotherapy, and radiotherapy, I have no complaints about the excellent service the NHS has provided throughout.

My major concern is the financial implications that result from a diagnosis of breast cancer, and the rigidity of the benefits system. There are a number of threads on these forums, which highlight the ignorance of the DWP regarding the chronic effects of this disease once active treatment has finished.

As a cancer sufferer who needed chemotherapy and radiotherapy treatments, I was rightfully granted Employment and Support Allowance. I am now trying to recover and convalesce from these harsh treatments and, for the time-being, I am still in receipt of ESA. Unfortunately, however, I am fully aware that within a few short weeks, I will be instructed to attend for a medical with the DWP and a non-qualified assessor sitting behind a computer will, no doubt, decide that I am fully fit to work and my benefits will be withdrawn.

I do believe that this system is seriously flawed and needs to be changed as soon as possible. In the meantime, however, I need to go and lie down and have a rest after typing this. I am sure any prospective employer will be happy to accommodate my need to sleep every hour out of three! Lol.

Sue xx

PS. I realise this is an area that you didn’t ask for views on, but I do feel this issue needs to be tackled.

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Having so many appointments at hospital and having to pay to park… having cancer is very expensive! Surely cancer patients should be able to have free parking at hospitals

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Hi Nicole

In response to your questions, in number order:

  1. Good:

  • kindness and concern I had when I switched hospitals and found oncologist and breast surgeon who wanted to fight my corner.

  • the level of skill and hard work put in by the chemo unit nurses

  • being able to have a portacath fitted for chemotherapy

  • follow up has been good including the ability to ring and see someone the same week if I have concerns.

  • GP and district nurses were wonderful during my treatment and so helpful.

Bad:

  • the waiting time for biopsy results and chemo

  • having to travel long distance for some of the chemo and for radiotherapy as not available in the local hospital and then having long waits (up to 5 hours) in the chemo unit

  • chemo units very understaffed.

  • the cost such as travel to the hospital, some parking charges

  • the difficulties experienced in getting Employment Support Allowance and the expectation of being fit to work in a matter of 4 weeks after finishing 10 months of treatment.

  1. Once into the system the care has been good. The problem has been having to travel for chemo and rads (50 minutes to hour by car, by train would be about 2 hours and then you’d need to get a taxi too).

  2. Faster turn around on biopsy results. Being told to wait 14 days for results is too long after waiting 14 days for a consultation in the first place.
    More local units that can dispense chemo and rads.
    Less waiting time when you have complications ie. I developed a blood clot and had to wait longer than someone without cancer diagnosis because I had to be seen in a medical admissions unit (waited 4 hours and I was very sick as I’d had chemo a few days before). Many other examples of this.

  3. No.

  4. I’m aware of the guidelines. the problem is, as far as I’m aware, waiting times etc are from diagnosis not from the day you see your GP. I saw my GP second week January but didn’t start treatment until 4th March and that was only after oncologist battled on my behalf. Basically the chemo unit was struggling with numbers.

Hope this is helpful. Please don’t feel you need to respond to me as an individual but I’m happy to help with clarification or more detail as needed.

best wishes and thank you
Elinda

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Hi

What a great opportunity for you.

I hope you can stress the positives of the current system and stress that great improvements have been made in the care and treatment of breast cancer.

Two improvements that I believe would improve care

  1. Out of hours provision, particularly during chemo when we are vulnerable. Not every hosp has a helpline and gp’s are hit and miss. Also for women with secondaries, I don’t really want to speak for them but I have read some distressing posts where real expertise would be needed to treat some acute problems and there is no immediate access to help.

  2. Waiting for results- it is one of the most distressing areas, we all post about it. There are some tests where you have to wait but for others like mammograms it would be possible to get a review there and then. So where ever possible results are given as soon as possible to cut anxiety. This area should not be underestimated just because it cannot be measured in survival and outcomes. It is what makes our lives stressful and reinforces uncertainty.

On a personal note I would like to have met and dealt with my oncologist first, rather than dealing initially with my surgeon. This may not be the case in all situations but I found that I had received a cancer diagnosis but the consultant I then saw was not a cancer doctor and could not talk to me about the cancer and what that meant for me. The surgeon was solely interested in the operation and although he gave me my results and some general statistics he was not an oncologist. I know that he worked as part of a mdt but I think even one app with the onc could have helped me a lot.

Good luck

Debx

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Hi Nicole,

I am not going to go through your questions as mostly I was happy with my treatment.

I do not think that enough notice is taken of patients who suspect they have cancer but who are sent away with the minimum of tests. I was only diagnosed on my third attempt to get treatment at my local breast clinic. That meant that I had cancer for three years before it was actually diagnosed.

I was not happy with the distance I had to travel for my chemo, 44 mile round trip but lucky that after the first 3 I had the second 3 at my local hospital. Radiotherapy for 3 weeks was the same 44 mile round trip. Provision is now being made for treatments closer to my home which will be great for others who need it in my area.

I had to pay for parking every time I went for treatment.

The provision for those who develop Lymphoedema is pathetic. I suffered for months before finally demanding to be referred out of the area as there is no provision at all where I live. I am lucky that I have someone to see if I have problems with my arm but, my specialist admits that she and several of her colleagues are trying desperately to improve the service.

My GP has been the best.

I was also lucky enough to have 16 of my 18 Herceptin infusions via Healthcare at Home. The nurses were almost always on time so I was saved the travel, the parking and the waiting. Unfortunately this cannot be financially viable and I wonder how long it will continue.

Hope this helps and good luck.

Emmbee

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Hi Nicole

Positives - I have been under the care of Oldham PCT and I have to say I think they have brilliant protocols in place. Hotline with Christies, District Nurses ( I cant believe some women have to inject themselves ect), GP and reception staff brill, A & E staff fab when I became nuetropenic. Even going for blood tests before chemo was allowed to the front of the queue. The fab new radiotherapy unit in partnership with Christies - is great and designated free car park. Fantastic example of partnership work.

However from reading the forums some women in other areas dont get all this. Good luck with the conferance.

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Hi,

Generaly positive though echo other comments about parking, cost,waiting for results etc.

Have lymphoedema and would be good to have regular MLD but provision is hit and miss and funding a lottery.

Out of hours service/support is needed, this is a very vulnerable time and GPs/hospital staff not always able to deal with cancer related problems.

I’m a secondaries lady so in addition to other points i would say:

Medics should err on side of caution when we report problems after cancer diagnosis so tests for secondaries easier to get, I complained of pain for between 12 - 18 months before getting CT and bone scan.

On the secondaries side of things we could do without more worry and stress caused by plans to review DLA etc. OK, some of us live longer than expected with secondaries but that doesn’t alter the fact that we are having on-going treatments, medicines etc and have the knowledge that we are life limited and our future uncertain.Benefits should be protected, no further hoops to jump!

Having said all that I am still very grateful we have NHS and think that on the whole they do a great job, it’s funding and possible cuts in NHS and benefits that most worry me.

Julie

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hi, what a great opportunity for you, thanks for getting our thoughts too.

Like sally , i am also at oldham and they have been great. All of my treatment has been at my local hospital which reduces the stress, but i am confident that it is led by experts from christies.

District nurses did my injections and kept an eye on me and made me feel looked after- this was great.

GP was brilliant through chemo, came out to see me, chatted on the phone, gave emergency appointments for my children when they were ill to reduce infections in the house

The chemo unit is small and friendly and personal, i cannot fault it

I havent had my rads yet, but the new christies unit at oldham provides free parking for radiotherapy patients which will help

The one stop clinic was fantastic and reduced stress, even though it was still hugely stressful!

Timescales were great for surgery and chemo and rads starting, all within guidelines

First appointment was within a week of finding lump which was brilliant

Bad stuff-

BCN superbusy so not very available or proactive, when she was able to she provided great support but basically she is so busy its hard for her to help everyone.

My surgery was swapped from the breast unit to the bowel ward and was a horrid experience, nurses no idea how to deal with a breast cancer patient, totally insensitive and degrading treatment

Concerns_

I am very scared that, god forbid i need the service again, that the same levels of care will not be there. The 2 week dianosis and one stop clinic, the short wait for surgery, chemo and rads, the loacl treatment but by cancer experts. All of these things have been fantastic and need to be kept.

Thanks
Vickie