Classification: Official-Sensitive
Publication reference: PRN01215
To:
Trust:
- chief executive officers
- medical directors
- chief operating officers
- directors of breast screening
- breast screening programme managers
Integrated care board (ICB):
- chief executives
- medical directors
- GP practices
Cc:
LA directors of public health
Regional:
- directors
- directors of commissioning
- directors of public health
- heads of public health commissioning
- screening and immunisation leads
- medical directors
Dear colleague,
Action required: Referrals into the very high risk breast screening programme
NHS England recently advised breast screening services about the delayed referrals of some women who are eligible to be screened within the very high risk (VHR) NHS Breast Screening Programme. I am writing with further information and to set out some important next steps on this.
Background
In 2000, research showed that women who had received radiotherapy treatment to their chest for Hodgkin lymphoma were at higher risk of developing breast cancer.
In 2003, the Chief Medical Officer commissioned a patient notification exercise (PNE) and the process of identifying women was co-ordinated by the then cancer networks and surveillance for this group of women was conducted through symptomatic services. Women do not start annual MRI testing immediately following treatment – but between 8 and 15 years after treatment depending on their age at the time they were treated. This is because the increased risk does not emerge until approximately 10 years later.
Following the Cancer Reform Strategy, the NHS Breast Screening Programme established a pathway for women who are at very high risk (VHR) and invites women annually for testing. This remains reliant on women being referred to the programme.
A recent audit by the Breast Screening After Radiotherapy Dataset Group (BARD) identified that some women in this group have not been referred to the VHR breast screening programme for annual surveillance. NHS England has been responding to this audit since receiving the data.
NHS England has rapidly reviewed each case and the findings show that 1,487 women in England need to be incorporated into the VHR programme as soon as possible. The review showed some women were already included on the breast screening VHR programme, some were ceased from the routine programme following bilateral mastectomy, some received radiotherapy to breast tissue aged under 10 and were therefore ineligible for inclusion onto the VHR pathway, some could not be traced, or are no longer resident in England.
Action that is being taken by NHS England
- NHS England will send a tailored letter to each woman who is eligible for VHR screening to explain the issue and to inform them of their eligibility, depending on their individual circumstances. These letters will be sent first class on Monday 4 March.
- NHS England will also write to those women who have been ceased from the programme due to having had a bilateral mastectomy. The letter will inform them what has happened, offer them an apology for what has happened and advise them that their case will be reviewed by their responsible Trust.
- The letters will provide contact details for a dedicated helpline which will support women affected with any enquiries on this issue (Tel: 0345 8778962). This will initially operate 7 days a week – Monday to Friday, 9.30am to 5pm and Weekends 10am to 4pm (local call charges apply).
- While the 2003 look back was a one-off piece of work to look at that group of women that had had radiotherapy for Hodgkin lymphoma, NHS England is also urgently checking that all other eligible women are on the VHR pathway post 2003. While final checks on this will be completed in the next few weeks, we understand that most women in this group are either already on the right screening programme or not yet eligible for very high risk screening. Any women identified as not having been referred to the VHR programme will be contacted and details will be provided to BSO’s to invite them for appropriate imaging.
Action to be taken by NHS breast screening services
At briefings last week, we advised services on actions that needed to be taken and we would like to thank you for all you have done already to ensure this happens at speed. To reiterate these actions:
- Your screening service may be responsible for following up with some of these women to invite them for appointments. The NHS England breast screening programme has securely sent patient lists, template letters and technical supporting information to each relevant BSO.
- We know services have been reviewing this information and starting to prepare. We ask that each service sends a follow up letter, 3-7 days after the NHS England letter is sent out. Follow up letters should arrive during the week and not on a Saturday.
- Each eligible woman must be offered appropriate follow up within three months and we are very grateful for the prioritisation of this.
Future action to be taken by trusts
Trusts will be provided with details of women affected that we know have been diagnosed with breast cancer, enabling a review of the cases. Guidance for the clinical reviews will be provided by NHS England shortly to Trust Medical Directors.
Clinical reviews should be carried out in the following phases:
Phase 1: For women who are still alive and have been diagnosed with breast cancer, reviews should be completed by 6 July.
Phase 2: For those women who have died, best endeavours should be made to contact the next of kin in line with duty of candour. Trusts should identify and contact the families/next of kin of people in these cases following review.
Information for general practitioners
While communications are being sent to affected women and a dedicated helpline is being set up, we appreciate that colleagues working in GP practices may receive queries. We have therefore included a supporting questions and answers in Annex A and would like to thank you for your support.
GPs cannot refer women to the breast screening very high risk programme. National guidance requires that referrals can only be accepted from an oncologist or from Breast Screening After Radiotherapy Dataset (BARD).
If a GP has a patient who had radiotherapy to above the waist for the treatment of Hodgkin lymphoma when aged 10 – 35 years who believes that they have been affected by this issue but have not received a letter then they can advise their patient to contact the Helpline who can arrange for her case to be reviewed. To do this the patient will be asked for their NHS number and Date of Birth to accurately identify her case.
Breast screening very high risk referral/surveillance protocols
These protocols are set out here: Breast screening: very high risk women surveillance protocols – GOV.UK (www.gov.uk)
Communications support
To reduce any anxiety, it is important that women and families can get a full explanation and follow up advice directly from the NHS. Outside this direct contact with patients, please treat this information sensitively. To support conversations with patients, we have included questions and answers in Annex A.
If you do receive any media enquiries, please direct them to the NHS England press office: www.england.nhs.uk/contact-us/media/
NHS England will also brief national stakeholders in case they receive any queries.
Complaints or feedback
Complaints and feedback should be signposted to the NHS England complaints team:
- By post to: NHS England, PO Box 16738, Redditch, B97 9PT
- By email to: england.contactus@nhs.net, stating ‘For the attention of the complaints team’ in the subject line.
- By telephone: 0300 311 22 33 Opening hours are 9am to 4.30pm Monday to Friday, except Wednesdays when opening is at the later time of 9.30am. Closed on bank holidays.
Queries from breast screening services to NHS England
Any queries that breast screening services and/or commissioners have can be emailed to: england.nhsbspxrt@nhs.net. Please note this is not for direct contact from women affected.
Thank you for your help in ensuring this is managed as a priority.
Yours sincerely,
Steve Russell, National Director for Vaccination and Screening and Chief Delivery Officer, NHS England
Dr Amanda Doyle OBE, National Director for Primary Care and Community Services, NHS England
Professor Stephen Powis, National Medical Director, NHS England
Annex A: Question and answers to support patients
Background information
Some women are at higher risk of breast cancer because they have received radiotherapy above the waist to treat Hodgkin lymphoma when aged between 10 and 35 years old. These women should be referred to annual breast cancer MRI screening, starting 8 to 15 years after their treatment depending on their age. This is because the increased risk does not emerge until approximately 10 years later.
This advice came from the Chief Medical Officer in 2003, who also advised that all women who had this type of radiotherapy between 1962 and 2003 should be invited for an annual MRI. Depending on their age they should also have been offered a mammogram.
Last year, NHS England was alerted that some women were not receiving the level of screening that they need. After a thorough review of each patient record, the NHS is now contacting everyone affected to let them know, and to offer appropriate follow up care and support.
Why has this happened?
In 2003, some women were identified as being at increased risk of breast cancer, so were contacted by their local Trust to discuss their risks and were offered appropriate screening. A recent review by NHS clinicians showed that some of the women eligible for very high risk annual screening were not invited.
When did you find out there was a problem?
Last year, NHS England was alerted to the issue and carried out detailed investigations into each patient record to identify what action is needed.
Why am I being informed now?
Last year, NHS England was alerted to the issue and a detailed investigation had to be carried out into each person’s record to understand their circumstances. This review found that some people were already on the right screening pathway, some were not eligible and some needed to be invited onto the very high risk screening pathway. Now the review is complete, patients are being quickly contacted.
How quickly will I get my screening?
If you are one of those who needs very high risk screening, the NHS will contact you and your local breast screening service will offer you an appointment for an MRI scan within three months. We will also check if you need a mammogram and if so, you will be offered that on the same day as your MRI.
Why do I need an MRI and not just a mammogram?
For women who are considered at very high risk of breast cancer or for those with very dense breast tissue, an MRI is a more sensitive test as it can provide a very detailed image of your breast. Because you are considered at high risk of getting breast cancer, you are being offered MRI. You may also be offered a mammography at the same appointment, depending on your age and when you had your last one.
I’ve had a mammogram within the past 6 months. Can that mammogram be read alongside the new screening MRI or does another one need to be taken on the same day as my MRI?
A mammogram taken within the past 6 months, regardless of its setting (screening, symptomatic or private), does not need to be repeated and should be available to review alongside the MRI.
I have a relative who died of breast cancer who I think should have been on the very high risk programme
As part of the detailed review, while it can’t be determined with certainty whether it would have changed outcomes, NHS Trusts are committed to trying to contact families of patients that died of breast cancer to offer an apology and full discussion about not being on the very high risk pathway .
What happens if you find a tumour?
If cancer is found as part of the screening, your clinician will talk you through the options available and begin the treatment process.
Will I get any compensation for this?
If you would like to seek legal advice, you may wish to review the information available from NHS Resolution in the first instance Advice for claimants – NHS Resolution
Radiotherapy question and answers
What sort of radiotherapy puts someone at risk?
Radiotherapy is a very effective treatment for many cancers but like all treatments has some unwanted side effects, including second cancers. Girls and young women (aged 10-35 years) who receive radiotherapy to the chest involving breast tissue are at increased risk of developing breast cancer later in life. Breast screening with mammography and/or MRI (magnetic resonance imaging) is effective at detecting breast cancers when small and potentially curable which is why it is recommended, starting between 8-15 years after radiotherapy. Screening doesn’t start immediately after completion of radiotherapy because the increased risk doesn’t emerge until approximately 10 years later. Screening for other second cancers isn’t currently recommended but work is underway to see if there is sufficient evidence to introduce this in some circumstances.
What is Mantle radiotherapy?
This refers to the type of radiotherapy that was used during this time window to treat patients with Hodgkin lymphoma. This technique delivered the radiotherapy to a large area of the neck, chest and upper body. However, it has since become much less frequently used.
Is it just women who have had Hodgkin’s lymphoma who have this sort of radiotherapy?
No, radiotherapy is used to treat Hodgkin lymphoma in both males and females. The risk of a man developing a breast cancer following radiotherapy to their chest area when aged <35 years is low. This means that you do not need to have annual screening.
Also, breast screening has not been shown to be beneficial, even in men at high risk such as due to inherited genes, and so is not recommended by international guidelines.
Question and answers to support staff
What should we advise women over 71?
Women are being invited to attend for a baseline MRI regardless of age. In all women over 50 years the images taken at this screen will inform the optimal screening tests needed going forward
A woman rings and tells me she has a letter and had breast cancer – what do I advise her to do?
As with routine screening, women diagnosed with cancer and under care should continue to be invited for VHR screening. This is regardless of whether the woman was diagnosed via screening or symptomatically. This is a failsafe mechanism to make sure that all women are invited. Depending on where she is in her treatment the woman can decide to either attend or opt-out of this screening episode. If she opts-out, the NBSS episode should be closed as under care temporarily and her next test due date moved forward 12 months
Will some women be finding out for the first time they are at higher risk of breast cancer?
No, all women identified in the Patient Notification exercise (PNE) were told in writing that they were at increased risk and were invited for a personal consultation to discuss their risks
Is this a similar risk to a BRCA carrier?
Very high risk is defined by the NHS breast screening programme as:
- women with a lifetime risk of 40% or greater due to a specific genetic abnormality in the woman or her family
- those receiving radiotherapy to breast tissue during treatment for Hodgkin and non-Hodgkin lymphoma between the ages of 10 and 35 years
- a small number of women who received radiotherapy to breast tissue during treatment for cancers other than lymphoma
What do I do if the press call?
If you do receive any media enquiries, please direct them to the NHS England press office: www.england.nhs.uk/contact-us/media/
What do I do if a relative calls, saying their loved one has died?
The vital status of all women being contacted was checked as close to the send out date as practically possible. It may be more appropriate to provide them with an opportunity to contact the CNS at a later date to discuss this issue rather than attempt a conversation now. If agreed, the contact details for the CNS should be provided.
To support GP practices, if they receive calls
I’ve heard about some women needing more regular breast screening and think I might be affected but I haven’t received a letter yet, what shall I do?
Letters have been sent by the NHS to women affected by this issue. If you think you may have been affected, please wait for a couple of days to see if you get a letter. If not, there is a dedicated helpline. This will initially operate 7 days a week – Monday to Friday, 9.30am to 5pm and Weekends 10am to 4pm (local call charges apply).
I’ve received a letter saying I need more regular breast screening – what happens now?
You should be contacted by your local service to arrange an appointment within the next few weeks. If you have any questions in the meantime, or if you don’t receive an appointment letter, please contact the dedicated helpline on Tel 0345 8778962. This will initially operate 7 days a week – Monday to Friday, 9.30am to 5pm and Weekends 10am to 4pm (local call charges apply).
I haven’t received a letter yet inviting me for breast screening, but I am worried about some possible symptoms. What shall I do?
Please make an appointment at your GP practice.