Our new report finds hundreds of breast cancer patients denied or rushed into 'life-changing' surgeries amid rise of policies to restrict breast reconstruction.
Hundreds of breast cancer patients are being denied or rushed into the reconstructive surgeries they need, following the introduction of 'arbitrary' policies in some areas of England to restrict NHS breast reconstruction services.
Our new report ‘Rebuilding my body: Breast reconstruction in England’ compiles evidence from Freedom of Information (FOI) requests conducted by the charity in 2017. It shows that 47 out of 208 Clinical Commissioning Groups (CCGs) in England (22.6%) have established policies to restrict reconstruction services for non-clinical reasons. With a further nine CCGs (4.3%) having draft policies or informal restrictions in place.
The emerging policies – which have been described by the charity as 'totally unacceptable' and 'not in the best interest of patients' – include limiting the number of surgeries women are allowed, enforcing a time-frame on their completion and denying ‘balancing surgery’ to the unaffected breast to achieve symmetry with the reconstruction, resulting in widespread variation in care across England.
The report has been launched today, alongside new clinical guidelines, at the Association of Breast Surgery’s 2018 Conference in Birmingham.
All breast cancer patients requiring a mastectomy can opt to have breast reconstruction if they want to, either immediately or sometime in the future (known as delayed reconstruction). While the majority choose not to have reconstruction, for the significant number of women that do, it is an essential part of their treatment and plays an instrumental role in their recovery and ongoing quality of life – often helping restore their body confidence, self-esteem and sexuality.
It is estimated that around 11,500 of the 42,000 women diagnosed with breast cancer each year in England undergo a mastectomy – with around 2,400 (21%) of these patients opting to have immediate breast reconstruction, and around 1,100 (10%) having delayed reconstruction.
For most, reconstruction is a process requiring multiple procedures, depending on the patient and method chosen. There are two main types of reconstruction: patients can have an implant inserted, or they can have a breast shape recreated using tissue from another part of their body, usually the back or abdomen.
Where the reconstructed breast may not match a patient’s unaffected breast, clinical guidelines recommend that they are also offered ‘balancing surgery’ to increase, decrease or change the shape of their remaining breast to help them achieve symmetry.
With research and clinical progress in recent decades seeing best-practice guidelines become well-established in the UK, Europe and North America to recommend patients be offered reconstruction at the right time for them, the policies also directly contravene recent clinical advice issued by NHS England’s Breast Cancer Clinical Expert Group in 2017 which states: “patients make decisions at very different speeds so delayed reconstruction or further operative procedures to optimise symmetry should be available without time restrictions.”
With policies emerging in geographical clusters in the West Midlands (20 CCGs), London (12), the East (6) and the South West (5), and a further 4.3% of CCGs (9 of 208) being found to have draft or informal policies in place, experts are concerned that, unless urgently addressed, the number of women being affected by these restrictions will only continue to increase.
While the reasons for the policies remain unclear, the NHS is facing unprecedented financial pressures, and, with patients and clinicians alike wanting all appropriate reconstructive options to be available, it begs the question whether the restrictions may have been introduced to help make efficiency savings.
We are calling for an immediate end to the restrictive policies, urging CCGs to ensure patients are provided with photos of a range of surgical outcomes by their surgeons to help inform their decisions – using ‘shared decision-making’ tools – and to ensure all patients are offered appropriate and timely support and counselling to help make the best choice for them.
Alongside the Association of Breast Surgery (ABS) and the British Association of Plastic, Reconstructive and Aesthetic Surgeons (BAPRAS) we have today launched new guidelines, calling for CCGs across England to ensure all patients to have access to the services they need, regardless of where they live. The new guidelines include:
- That all patients should be able to choose to return for breast reconstruction surgery at any point following their diagnosis and initial treatment
- That a full range of symmetry and adjustment procedures should be available, including surgery on the unaffected breast
- That clear communication is needed between surgeons and their patients in treatment planning to ensure patients have realistic expectations of what reconstruction can achieve
With a clinical consensus still to be developed regarding the number of surgeries likely to be required using newer techniques, the new guidelines suggest that for most patients, a satisfactory result should be possible within two to three surgeries but state that for those for whom this is not achieved or those that experience complications, further corrective surgery should not be restricted or denied.
Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, which led the report, said:
Whether to have reconstructive surgery is a very personal decision – one which is never taken lightly and which many women need time to think about. Following their diagnosis and as they undergo long-term treatment, many women are going through some of the most gruelling months and years of their lives.
It is totally unacceptable that any patient is being denied the reconstructive surgery they need or rushed into potentially life-changing decisions, at such a difficult time. Reconstructive surgery has profound benefits for those that choose it, helping give many their confidence and their lives back after breast cancer. These arbitrary restrictions in some areas of the country therefore represent a backward step in treatment and are absolutely not in the best interests of patients.
The reasons for these restrictions remain unclear, but with the NHS facing unprecedented pressures, their introduction despite clear clinical advice begs the question whether they are being driven by a desire to reduce costs. For those that want it, reconstruction must not be dismissed as a cosmetic or dispensable part of breast cancer treatment.
If we are to achieve the Government’s ambition of world-class NHS cancer care, all patients must be fully involved and supported in making decisions about their treatment – with their doctors, at their own pace. We hope these new guidelines will be practice-changing, ensuring all patients have access to the services they need and enabling more to live well beyond breast cancer.”
Jo, from Somerset was diagnosed with breast cancer in May 2017, aged 43. Jo underwent six rounds of chemotherapy, a therapeutic mammoplasty (a lumpectomy with reshaping) and radiotherapy. As balancing surgery is being restricted in her region, Jo is applying for funding to have her healthy breast reduced to achieve symmetry. Jo said:
Before I was diagnosed with breast cancer, if anyone had asked me what I’d do in that situation, I’d have said I’d have a mastectomy – it’s only a breast after all. But when it’s real, things are completely different. For me, my breasts are strongly tied to my confidence and femininity, and I simply don’t want breast cancer to be the first thing I think of when I look at myself in the mirror.
When my surgeon told me about the restrictions in Somerset, I was gutted to hear that there was yet another hurdle to overcome – as if having breast cancer wasn’t enough. Going through such a traumatic experience changes who you are. Whilst I understand that the NHS isn’t an endless pot of money, this surgery could help me return to as normal a life as possible and it feels so unfair that I cannot access it because of where I live.”
Mr Mark Sibbering, President of the Association of Breast Surgery, which led on the development of the new guidelines for Clinical Commissioning Groups said:
The option of breast reconstruction surgery, with balancing surgery when appropriate, is an essential part of the care of a patient treated for breast cancer. It is not cosmetic surgery, but part of their treatment. It should be available to all patients equitably.
The Breast Cancer Now report confirms concerns raised by both ABS and BAPRAS members that in some areas restrictions are being placed on access to this important part of breast cancer management.
We hope that the joint guidelines on ‘Commissioning of Oncoplastic Breast Surgery’ will help provide a framework for CCGs to use that will ensure appropriate and equitable access for all breast cancer patients regardless of where they live.”
Mr Joe O'Donoghue, Member of the British Association of Plastic, Reconstructive and Aesthetic Surgeons, involved in the development of the new guidelines for Clinical Commissioning Groups said:
It is unacceptable for some women to not be given access to essential reconstructive or balancing surgery purely because of where they live. We know that this surgery is a vital part of breast cancer treatment, recognised by the National Institute for Health and Care Excellence and internationally as beneficial to women’s psychological recovery and wellbeing.
BAPRAS calls on all Clinical Commissioning Groups to implement the new guidelines and ensure that all women access the appropriate care they need, when they need it.”