Hereditary Breast Cancer Helpline – Achievements
255,000 calls since its inception in 1996 with no complaints whatsoever, on very limited funds. Website receiving around 50 – 100 hits per day. Online groups with over 10,000 members in the groups
Successfully lobbied for genetic services to be funded centrally through specialist commissioning in 1996. Invited to Whitehall to present the evidence for this. Met with Baroness Cumberlege, Minister for Women’s Health.
‘I think she is enormously courageous, and I think it is personal testimony. People like Wendy who explain what the choices were and how they reached those choices, that has a profound effect on other women and I do congratulated her. I think she will move this whole area forward in a way that perhaps the professionals can’t’. Baroness Cumberlege ‘Facing the Music Jan 1997
Attracted the strong support of practically every geneticist in the UK, including the Chair of the NICE Guideline Committee on Familial Breast Cancer, and the respect of DoH officials and the personal support of former Health Minister Andy Burnham. Endorsements can be viewed on the website – click here. (Wendy has additionally worked for two and a half years as a research scientist in the NHS on many invaluable data projects.)
Receives dozens of often extremely emotive testimonials daily from users who genuinely believe they owe their life to this service. In short have provided a lifeline, not just a helpline, to many. Many testimonials are available and displayed on the website.
Options for Patients
Pioneered for all options including surgery to be available and viewed as acceptable, as against the face of much opposition from many of the medical profession. The results are staggering, ‘risk reducing surgery’ saves 1 life for each 2.2 operations in known gene carriers. Thousands of these such operations have since been performed, and are now becoming more acceptable world-wide due to positive publicity. Recent figures extrapolated from the Manchester RGS show that 740 lives have now been saved. Conscientious cosmetically pleasing results are now being achieved by a core of surgeons. The helpline has also striven for MRI scans in addition to mammography (as validated on the MARIBS Study) to be funded and
available for all those appropriately qualifying as per NICE recommendations and guidelines.
Gene Patent Challenges
Wendy sold her farm to help fund a fight to keep the two breast cancer genes from being ‘patented’ in 1997, initially challenging a multi million pound coordinated lobby in the European Parliament to legalize the patenting of human genes, and subsequently challenging Myriad’s European and UK patent application. Testing by the company in the USA who own the BRCA 1 and 2 patents, costs more than three times as much as testing here in the UK. Manchester Regional Genetics claims this has saved them over £3.8 million already. Audited genetic testing figures from the CMGS, courtesy Dr Rob Elles, confirm a saving to date of around £8 million per annum, £55 million to date. (see separate table, genetic testing cost savings) Wendy Watson versus Myriad Genetics is now a teaching module / round table discussion in America!
Genetic Testing and Insurance
The Helpline was instrumental in suggesting the current, highly satisfactory for all, moratorium in genetic testing and insurance. Wendy suggested a ceiling to which companies could not request test results, but requests over this ceiling could be subject to this scrutiny. This kept things fair for all; thus the moratorium was adopted and has been extended three times, now until 2017 – with both parties (insurance industry and patients) happy.
Helpline opening hours and availability
Despite very limited funds, the helpline has been available 24 hours per day. This has largely been achieved by Wendy covering it mostly free of charge every minute herself. It has occasionally fielded calls from distressed cancer sufferers at night and weekends when nowhere else was open. Of course, this is not the Hereditary Breast Cancer Helpline area of expertise, and advice is never given to that end, but just being someone to talk to in the middle of the night can be a tremendous solace.
Training and expansion
The Helpline has now identified and brought together a wonderfully diverse group of 22 suitable people from across the UK, all with various varied personal experiences, but with a common desire to share those invaluable experiences and insights with others. The training courses have been devised by Wendy Watson, Helpline founder and lead, in conjunction with a formal day, courtesy the NOWGEN centre.
Has influenced the professional world by speaking at international conferences across Europe, ‘Psycho-social aspects of genetic testing for breast cancer’ Framework 5 collaborative approaches in Europe, ”providing the data from the helpline to assist counselors in to identify the needs of patients in order for them to develop their counseling strategies” (Prof Neva Haites, Aberdeen). Acted as a consultant in the USA for the development of a manual to help build a similar service there. Assisted Japan in their web-based service. Has also taken part and made many TV documentaries shown world-wide in an aim to make the surgical option to be seen as an acceptable one, for those who choose it.
The previous Minister of Health, Secretary of State for Health Andy Burnham used the helpline himself. As a result his wife was referred to Manchester Regional Genetic Service and herself underwent testing and the subsequent operation pioneered by Wendy all those years ago. Andy Burnham has given express permission for this to be known publically. MPs Natascha Engel and Patrick Mcloughlin have taken on the case of funding of the service, lobbying current Secretary of State, Andrew Lansley for provision of central funding.
Helpline users across England have written to and visited their MPs, requesting sensible financial support for this unique service, with marked success. Already, many have written to support this bid for central funding. John Healey, Shadow Health Minister, has written personally tremendous support messages evenings and weekends. Around 30 MPs have now written to Secretary of State for Health, expressing support for sensible central funding for a national service.
Help for the Moderate Risk Group
Covered separately, but the moderate risk group has been one of the key areas Helpline Lead, Wendy, has studied over her 19 years of experience. This is a significant group and number of people whose needs have been difficult to meet. In reality however, they have limited options from within the health service. Their risk is not great enough (1 in 6 to 1 in 4 chance of developing breast cancer) to qualify for genetic testing, or indeed likely to be due to a high risk known gene. They are to have an annual mammogram from age 40 – 49. A full package of care for this 3% of the population has been devised over the years including genealogy advice on further family history research. This has been greeted with immense approval from within the genetic community as a whole, and from the moderate risk ladies. Approved by Director of the National Breast Screening Programme, Prof Julietta Patnick
The Helpline has set up a voluntary database for anyone at increased risk, and in particular for the ‘moderate risk’ group. This is the only central database of these women. This enables receipt of monthly newsletters giving details of current/future trials which may be impossible to access or hear of by this sector otherwise, and may be of immense value, both to patients and
researchers alike. Group support meetings are also held across the UK, the database giving easy access to advertizing these events.
The Helpline lobbied for NICE Guidelines on Familial Breast Cancer to ensure appropriate referrals where relevant, and not at the whim of the GP. To ensure all the options were made available where appropriate. The Helpline was a part of this guideline committee. The Chair of this committee is Prof Gareth Evans, who is also the Helpline’s chief advisor, ably supported by leading geneticist Prof Ros Eeles. Included is his personal ‘glowing’ letter to Wendy, Prof Gareth Evans said at a recent charity ball at Chatsworth.
‘Wendy pioneered this way of thinking when the weight of the medical profession was against her. Wendy has a wonderful way of presenting things so that people feel enabled rather than be pushed in a direction. All the women I have seen, have said that Wendy empowered them to make their own choice. That is what the Hereditary Breast Cancer Helpline is all about and that is why we have to fight to keep it.’
His respect for the service is echoed by many leading geneticists and is considered to be an important part of the patient care and pathway. NICE guidelines recommend ‘responsible peer support’ to be an important element of the overall care of these patients, and voted it number 2 in the key priorities for implementation..
Gallery- Reconstructive surgical options
Becky, Helpline lead Wendy’s daughter initiated this incentive. She, at a very young age, had to make decisions on surgical procedures and outcomes, yet little information was available. Hence the inception of the very useful gallery on the Hereditary Breast Cancer Helpline website, giving details of each procedure and surgeon. Patients and their partners have found this to be of huge value.
DOH Review of services available in the Voluntary Sector
In February 2010, the DoH published their findings of a comprehensive review of the voluntary sector and its provision of support for hereditary breast cancer patients or ‘worried well’.
The review found that information was widely available on the ‘net’ and from most cancer charities, however it clearly stated that the Hereditary Breast Cancer Helpline was the only open access ‘peer support’ service. It suggested a set of baseline requirements which only the Hereditary Breast Cancer Helpline could or did fulfill, thus concluding that at the present time this is the only service which fulfills the NICE requirement.
Hereditary Breast Cancer Awareness Weeks
Two of these such weeks have now been held. The first in 1996, with strong support from Diana, Princess of Wales. Leaflets were sent to every GP
surgery to explain ‘genetic breast cancer’, who should be referred, and what the options were. The second held in August 2010.
Standard Written information for Patients, as per NICE Guidelines. Free of Charge and sent to all GP surgeries.
NICE Guidelines required standard written information for patients to be available for all on visiting the GP, yet this was not available. Helpline lead, Wendy co-ordinated a group of world acclaimed professionals to help write the two sheets. One for patients being referred on to specialist services, detailing ‘what happens next?’ The other sheet explaining why a referral was not deemed necessary giving useful help and advice. This was sent to every PCT to send to their GP practices as a download link, to be overseen regularly and was supplied free of charge.
Recent cost analysis leads to BUPA funding risk reducing surgery in ‘identified gene fault carriers’.
A simple cost benefit analysis of lives and money saved by the procedure of risk reducing surgery showed a saving to the NHS of £1,880,000 for every 100 of these operations performed in identified gene fault carriers. The analysis was deliberately kept simple. In health economic terms- no inclusion of pounds per year to account for savings in current years, however to offset this, no inclusion was made of savings on frequent screens both mammography and MRI.
BUPA accepted these researched findings and agreed to fund risk reducing surgery in a patient in Oxford- thereby setting a precedence. A further patient has just been accepted by BUPA for this process.
The Future- Awareness Raising
The remit of the Helpline, and the bid to raise public awareness, in order that more breast cancers will at least be detected earlier if not prevented, continues. We have been signed by Skye Textiles for their Charity Bags. This has enabled us to have ALL the details of hereditary breast cancer posted through every door in England. This year starts north of Bedford to Scotland. It is not a money making scheme, although modest contributions will be derived. The important aspect is the free advertising that is achieved.
Support Groups – 37 Regional, and Under 25’s, Partners and Men, and Jewish
There became an obvious need to set up local support groups across the UK, and two specialist groups – the Under 25’s for whom there is nothing on the NHS, and the Jewish community who have a tenfold increase of inheriting one of these faulty high risk genes. This needed co-ordination and training. A residential training course was held for all the group leaders in September 2011.
Instigated Mammogram Recall study
Over the past few years, there has been repeated criticisms of the NBSP – a service revered by many women. Flawed data from a Danish study has been featured in the BMJ, much to the distress of the Peer reviewers, claiming that Mammograms cause unnecessary anxiety, and do not in fact save lives. Further investigations were needed. The NHBCH performed a small pilot – and on this basis suggested The Genesis Breast Cancer Prevention Appeal take this forward with a more robust study. The result was 100% satisfaction in being recalled – even unnecessarily. The study has been requested by Prof Sir Mike Richards to help in the review of the BSP he has been obliged to carry out.
The Helpline compiled a register of surgeons guaranteeing never having used PIP implants. This was published and updated frequently, shared with anyone who was worried, interested or requested it – reassuring hundreds of patients
This is a unique situation; patients have to decide their own treatment before developing symptoms.
Helpline founder Wendy Watson has been honoured for these achievements by being awarded the winning title of TESCO Magazine Mum of the Year 2011.
She has written a book ‘I’m Still Standing’ published by Simon & Schuster £6.99.
She was recently awarded an MBE for the efforts.
A chain of self supporting information centres/charity shops has been initiated. 19 open in 2 years. Aim for national coverage within 5 years.
Shortlisted June 2014 Women of the Year Award in Science and Technology