I had a meeting before Christmas with Debbie Abrahams, my local MP, to highlight issues regarding secondary breast cancer that I had started campaigning about back in October. Debbie had asked a number of questions to ministers from this meeting but didn’t get sufficient answers and I had gone back with more questions.
I had an email one Friday night from Debbie’s secretary asking if I could meet with her and Heidi Alexander, the Shadow Health Secretary in London, to go through the issues I had raised.
I asked whether my friend Julia (who manages the @BCCWW account) who lives down in London, would also be able to attend the meeting. Like me, she is passionate about issues with breast cancer. She has had primary breast cancer but is a huge advocate for secondary and primary breast cancer and we have talked many times about the issues and statistics so have a very good understanding of the subject.
So off I went Tuesday 2nd February 2016 on the 9.35am train down to Euston. Two hours later I arrived, caught the tube to Victoria and then another tube to St James where I met Julia. We had some lunch and went over the hand out that I was going to talk about and give to Heidi and Debbie. We were due to meet Debbie for a pre meeting at 1.45pm so headed over to the offices.
Walking into Portcullis House it’s a huge impressive building and when we entered we had to be security checked with bags, coats etc before entering. After getting a badge to confirm we were visitors Debbie found us in the que and ushered us through to the downstairs café area.
A quick drink and chat on what we would discuss we went upstairs to meet Heidi. It is like a hotel with room numbers. Heidi was in room 209 so we finally found it and sat in the office waiting for her previous appointment to finish. Five minutes and we were shown in to meet Heidi.
Formalities over we sat down and I handed out the paperwork which supported what we were there to talk about. Julia and I introduced ourselves and a quick synopsis of our situations and our own breast cancer history.
We had SO many issues to cover in 45 minutes but as I had already shown to Debbie, I can talk quick and get the point across and Julia was thankfully there to help point out issues I hadn’t made and expand with what we could and underpin our message.
We went through many issues in such a short space of time it was pretty mind blowing!
I talked and Heidi and Debbie asked questions as we went through issues to confirm in their minds what was going on. Julia would comment as well to underline whatever point we were trying to get across. They were shocked at many of the points. I was very aware of time at 2.55 I knew we had to wrap up but had to get a couple more issues on the table and finish the lengthy document so her bell rang twice and we finally finished at 3.03pm. Someone else was waiting to speak but Debbie had made notes and I confirmed that we would follow this up with some actions after confirming to them the urgent actions that were needed.
I said thank you and gave a firm shake to Heidi and we left. Debbie escorted us down in the lift and we handed back our visitor passes and said our goodbyes. It was pretty surreal how quick it all happened and we felt in a whirlwind. I think we had a big hug together and then went to meet Sam Aldridge who deals with Policy and Campaigns at Breast Cancer Care to tell her all about what was said in the meeting and how they would support us as they knew we were attending the meeting. We agreed we would write an action plan.
We left Sam and went to have some dinner and also met up with one of our BCCWW friends Shirley who works in London and had seen that we there. It was lovely to finally meet her after much discussions over twitter.
Dinner over, Shirley headed off home and Julia escorted me to the tube station so I could get back to Euston to catch the train to Manchester. Luckily I only had a 10 minute wait and the train arrived. Back on the train I wrote up all the notes to the meeting and then dropped into the @BCCWW chat that was taking place at 9pm – 10pm. I arrived around 9.45 picked the car up and headed back home.
It was such a busy week! And thank you Julia for supporting me. Already it looks like we have had an impact as there have been a number of parliamentary questions asked – see the below. I know it is something that we both found quite stressful but also emotional. I have lost both my parents and Julia has lost her Dad, so the day after we both thought how much it would have meant to them being invited to a meeting in parliament with the Shadow Health Secretary. I know we did them proud!
In the meantime, if you wish to email your Hospital Trust to ask about data, the campaign is here it would be great if everyone can support this. We have helped in showing them this is very important for patients like us and we spoke for you all in this meeting. Now you can help by supporting this campaign. Please share this with all your friends and get them to support this too.
Thank you – Jo.
Below is the email that we have compiled from the meeting and the main highlights.
Dear Heidi and Debbie,
We wanted to follow up on our meeting and to thank you both for taking time out of your busy schedules to see Julia and myself. It meant a great deal to us that you listened to the man issues that concern us.
We really hope that you will be able to help push or influence change in some of the areas we discussed.
We hope you agree the urgency on data collection as this underpins everything discussed, it’s shocking that we don’t know how many people are diagnosed with secondary breast cancer. We know not all points here will be addressed but it would be excellent if you could add them to the policy changes you are compiling.
Important that we have meaningful data. The collection of data is a long overdue commitment.
We don’t know where this is falling through. The fact people are not being recognised by the system means possibly 20-45% of secondary breast cancer patients are not accounted for in statistics. As we explained because people are not followed, we don’t even know for certain how often & in what age groups, or disease types breast cancer recurs. Without knowing how many people are diagnosed with secondary breast cancer, it’s very difficult to plan and commission services.
Research on breast cancer survival and secondary cancer happens. But real people and their experiences are simply not tracked. Coding them correctly and at the right appropriate entry is essential to capturing this data.
If the government is really committed to improving cancer survival and treatment, information is a foundation. If this is done it will help with NHS resource, financial planning and managing the financial burden of cancer to the state.
Can you raise the issue of Data with Jeremy Hunt and possibly write to him about this? We feel very strongly that this is an urgent matter that needs urgent attention.
Reports show the Cancer Drug Fund (CDF) shows only 7% of patients have meaningful data when accessing drugs from the CDF – if this doesn’t happen then how can this help to drive reductions in prices from the pharmaceutical industry?
The USA have the same issues with lack of data but the #MBCProject is addressing this for American and Canadian patients. They are taking data from across the world, even the UK, to help provide a picture of secondary breast cancer patients. We need worldwide collaboration to support the #moonshot project. The USA are now committing $1billion to this project.
Cancer Drugs Fund
NHS England and NICE are currently consulting on a new Cancer Drugs Fund system. However, the timeframe is extremely tight – it ends just seven weeks before the new system for the Cancer Drugs Fund is due to be in place. The consultation is also very complex and difficult for patients to contribute to.
NHS England and NICE were supposed to be providing a patient friendly guide, to ensure patients who will be affected by the changes to the system are able to contribute and share their views on the new system. However, the consultation closes on 11th February and as yet, no patient friendly guide has been produced.
We would appreciate if you could highlight this issue by tabling a Parliamentary Question about the lack of patient engagement with the changes to the Cancer Drugs Fund. Maybe a PQ would be:
Can the Minister explain why NHS England were not able to produce a patient friendly guide to the Cancer Drugs Fund consultation?
Standards of Care
CQUINS – Targets for hospitals for primary BC patients have monetary incentives giving hospitals extra funding. Secondary patients do not have any targets therefore we are again forgotten and referrals have no timeframe. Everyone primary and secondary patients have to be within the 62 day target.
Research from 2012 suggests delays in treatment likely impact survival in primary breast cancer. Catching secondary disease quickly matters as well.
NICE guidelines should be mandatory to make the NHS adhere to the rules.
Standards of care for secondary breast cancer patients – we must see changes in these areas to give patients the best care.
The things we believe MUST change are at 1, 2 & 9 and the rest is a wish list that should be continually worked on
1. Clinical Nurse Specialists – many more needed in the secondary breast cancer setting
2. Multi-disciplinary team meetings (MDTs) and secondary breast cancer not recognised within MDTs but this will take away time and resource from the oncologist. There is no secondary breast cancer MDT due to Oncologists not having enough time or resources – this needs to change and this needs to be funded.
3. Continuity of care – there is sometimes no linked up service and they can be very disjointed
4. Timely info and care plan – sometimes can be lacking and when another long term issue/s arise eg lymphoedema
5. Emotional well being – access to support as can suffer from depression and PTSD
6. Access to info on support services locally and nationally – can lack in areas for this
7. Expertise in palliative care – need to get across that this is not for end of life care and can help with pain control and issues that secondary breast cancer patients have to deal with.
8. Support for partners and family, friends – very poor & inconsistent
9. Financial and employment – in our close circle of our breast cancer group @bccww have recently had 4 people with issues around this – this is very important and needs addressing.
10. Access to appropriate treatments and clinical trials – much needed and essential to give good quality of life for patients.
Again thank you for your time and support and we look forward to hearing from you.
Jo Taylor & Julia Bradford
These are the Parliamentary Questions that Heidi Alexander has asked, the first one due to Breast Cancer Cares request and the following due to our meeting!
Tabled on: Friday 11 March 2016
Due for answer on: Tuesday 15 March 2016
Department of Health
Heidi Alexander: If his Department will publish a patient-friendly guide to inform responses to the consultation on proposals for a new Cancer Drugs Fund. 
These are from our meeting:
Heidi Alexander : What steps he is taking to ensure that secondary breast cancer patients have access to a clinical nurse specialist as part of their care. 
Reply Jane Ellison: The independent Cancer Taskforce published its report, Achieving World-Class Cancer Outcomes, in July last year, recognising the importance of access to clinical nurse specialists or other key workers for patients with all types of cancer. NHS England is currently working with partners across the health system to determine how best to implement the recommendations of the Cancer Taskforce and has appointed Cally Palmer CBE (Chief Executive of the Royal Marsden) as National Cancer Director to lead on implementation, as well as new cancer vanguards to redesign care and patient experience. She has set up a new Cancer Transformation Board to implement the strategy, which met for the first time on 25 January. There will also be a Cancer Advisory Group, chaired by Sir Harpal Kumar, to oversee and scrutinise the work of the Transformation Board.
Heidi Alexander : How many people were diagnosed with secondary breast cancer in the last three months. 
Heidi Alexander : What steps he is taking to improve his Department’s collection of data for secondary breast cancer. 
Heidi Alexander : What steps his Department is taking to ensure hospital trusts routinely collect and submit data on secondary breast cancer. 
These questions all had the same reply below:-
Reply Jane Ellison: Public Health England (PHE) is responsible for collecting cancer data to support national cancer registration in England and recognises the importance of collecting data on recurrent breast cancer.At present pilot work in acute trusts has improved the reporting for breast cancer recurrence and metastasis to the National Cancer Registration Service but the uptake has been slow and the data is not complete. Further work is being scoped by NHS England and PHE based on the recommendation in the recent Independent Cancer Taskforce report to establish robust surveillance systems to collect this data on all cancers. Data on the number of people diagnosed with secondary breast cancer is not currently available.
As you can see the replies are very vague and have no timescales but with your help with the campaign we will hopefully get answers and actions.