Hi Wendy!

Thank you for your help and support. Hope your ‘away days’ are fun.

Thanks for offering a copy of the programme ‘My breasts or my life’.
This will be enormously helpful not only for other patients but also for teaching within the department. We can tell medical students about the
decision-making problems ’til the cows come home but only someone who has
‘been through it’ can truly portray the dilemmas.

All the best!

Helen

Dr Helen Gregory
Staff Grade
Medical Genetics
Argyll House
Foresterhill
Aberdeen AB25 2ZR

Gloucestershire Royal Hospital
Great Western Road
Gloucester
GL1 3NN
Tel: 08454 222222

Genetics Line: 08454 225517
(24 hour answerphone)
Genetics Fax: 08454 225366

Our ref: AD/DS

10 June 2008
To PCTs serving the Regional genetics service

Hereditary Breast Cancer Helpline

The Helpline performs a vital service which has been used by thousands of women and reduces workload to the NHS. There is NO equivalent of this and existing lines at CANCER Backup, CR-UK and Breakthrough do NOT give the expertise afforded by the HBCH. GPs and genetic services have benefited from the improved patient information and appropriate reassurance to those not at risk. NICE guidance on familial breast cancer supports the use of such helplines. The Manchester Regional Genetics service uses the helpline for women who attend, but PCTs are saved substantial sums on women who are appropriately reassured that they do not need specialist referral. I would strongly urge PCTs to support the helpline financially or its loss will result in increased work and financial costs.

Below is a list of the benefits of the service:

1. Well established helpline running for 10 years by a patient, but with general respect and support from the medical profession/genetic community. Prides itself in non-directional information resource for women.
2. Only Helpline open 24 hours per day, 365 days per year.
3. Still believed to be the only one of its kind in the world.
4. Huge database of women prepared to talk to others of their experiences with hereditary breast cancer issues.
5. Keeps abreast of all new or ongoing trials/treatments etc. and can provide information on these.
6. Used regularly by GP’s as a resource facility….i.e. nearest Genetic Centre, criteria for referrals etc. although nice guidelines have recently been issued to assist them in this. Also used as point to refer women whose history is unclear, or to refer women who wish to chat to others about their dilemmas. It has been abundantly clear over these last few years that many women have found speaking to this Helpline a very empowering experience. Many have felt isolated, and having the facility to speak to others has been invaluable for them.
7. Helpline represented on NICE committee, MRC funded MARIBS trials.
8. Lobbies insurance industry regarding genetic testing
9. Complete understanding of such issues as Patents, and, from the outset, has been instrumental in helping ensure that genetic testing remains legal and available in the UK.
10. Helpline shown on all medias (TV, radio, papers)
11. Wendy Watson or her daughter spend time explaining to women who appear to not have a significant family history how the genes work and assists them in further researching their family histories on BOTH sides to ensure that there are no other cases and to help them feel genuinely reassured.
12. Helpline number available in every GP surgery, and widely on the net.

Yours sincerely
Dr Alan Donaldson FRCP BSc
Consultant Clinical Geneticist

To Whom It May Concern:
Dear Sir/Madam,
I write to express my support for the Hereditary Breast Cancer Helpline. This unique service has provided support for hundreds of women who are faced with extremely difficult decisions. If one inherits an alteration in a gene predisposing to breast cancer, then one has a risk of up to 85% of breast cancer before the age of 70. Many women wish to consider risk-reducing surgery in order to maximize their chances of a normal lifespan unaffected by cancer. To use the statistics a different way, however, almost one in five women will not get breast cancer even with a gene alteration. The decision to remove one’s breasts is therefore a traumatic and difficult one, both for the patients themselves and also for their families, who may also be coping with their own risk as well as having to support their loved ones going through this.
There is only so much that we, as doctors and genetic counsellors can do to help patients cope with this. Advice from other patients who have been through the procedure and know what it is like, (and what the results of reconstructive surgery look like) is invaluable. The Hereditary Breast Cancer Helpline provides such advice from two individuals who have had risk-reducing surgery. I regularly recommend this helpline to my patients, and was horrified to learn that there may be a problem with funding. This only costs the PCT £400 per year. When compared with the possible costs of chemotherapy drugs and other treatments, this seems a very small amount to ask the PCT to pay.
If you need more information from me regarding this, please contact me. I would be pleased to come and give a talk about hereditary breast cancer for your benefit if that would help.
Yours faithfully,
Lisa Walker
Dr Lisa Walker, MRCPCH, D.Phil
Consultant in Cancer Genetics
The Churchill Hospital
Oxford
OX3 7LJ

Please reply to: Clinical Genetics Unit
Great Ormond Street Hospital for Children NHS Trust
Great Ormond Street
London WC1N 3JH

Tel: 020 7905 2607
Fax: 020 7813 8141

25 June 2008

Ms. Wendy Watson
The National Hereditary Breast Cancer Helpline
St. Anne’s Cottage
Over Haddon
Derby
DE45 1JE

Dear Ms. Watson,

Thank you very much for travelling down to Chelmsford from Derby to talk at our recent BRCA patient information evening. As you know resources for BRCA carriers are thin on the ground and we have started organising information events to let our patients know about additional sources of support and information, outside the NHS.

We invited all of our BRCA patients to the evening and were pleased that 40 patients and some of their relatives were able to attend. The overall feedback was very positive and many people specifically mentioned that they found your talk both interesting and helpful. I will get in touch with you again when we are planning an all day event for our patients, as I am sure that all our patients would like to hear more about your own experience and about your helpline.

With best wishes,

Yours sincerely,

Jennifer Wiggins
Cancer Genetic Counsellor
Tel: 020 7905 2852

Central Manchester and Manchester Children’s University Hospitals NHS Trust logo

REGIONAL GENETIC SERVICE

St Mary’s Hospital (SM2)
Hathersage Road
Manchester
M13 0JH
Tel: 0161 276
Fax: 0161 276 6145
1ST MAY 2008

Prof. Gareth Evans: Chair NICE GDG

To whom it may concern

Hereditary Breast Cancer Helpline

The Helpline performs a vital service which has been used by thousands of women and reduces workload to the NHS. There is NO equivalent of this and existing lines at CANCER Backup, CR-UK and Breakthrough do NOT give the expertise afforded by the HBCH. GPs and genetic services have benefited from the improved patient information and appropriate reassurance to those not at risk.

Below is a list of the benefits of the service:

Well established helpline running for 10 years by a patient, but with general respect and support from the medical profession/genetic community. Prides itself in non-directional information resource for women.
Only Helpline open 24 hours per day, 365 days per year.
Still believed to be the only one of its kind in the world.
Huge database of women prepared to talk to others of their experiences with hereditary breast cancer issues.
Keeps abreast of all new or ongoing trials/treatments etc. and can provide information on these.
Used regularly by GP’s as a resource facility….i.e. nearest Genetic Centre, criteria for referrals etc. although nice guidelines have recently been issued to assist them in this. Also used as point to refer women whose history is unclear, or to refer women who wish to chat to others about their dilemmas. It has been abundantly clear over these last few years that many women have found speaking to this Helpline a very empowering experience. Many have felt isolated, and having the facility to speak to others has been invaluable for them.
Helpline represented on NICE committee, MRC funded MARIBS trials.
Lobbies insurance industry regarding genetic testing
Complete understanding of such issues as Patents, and, from the outset, has been instrumental in helping ensure that genetic testing remains legal and available in the UK.
Helpline shown on all medias (TV, radio, papers)
Wendy Watson or her daughter spend time explaining to women who appear to not have a significant family history how the genes work and assists them in further researching their family histories on BOTH sides to ensure that there are no other cases and to help them feel genuinely reassured.
Helpline number available in every GP surgery, NHS direct, and widely on the net.
Yours sincerely

Professor D Gareth Evans MD FRCP
Consultant in Medical Genetics and Chair of the NICE GDG on familial breast
Cancer

Tim Elliott
Team Leader
Department of Health
Cancer Policy Team
Wellington House
133-155 Waterloo Road
London SE1 8UG

28th July 2008

To whom it may concern

Dear Colleague

Hereditary Breast Cancer Helpline

The Hereditary Breast Cancer Helpline was founded in 1996 by Wendy Watson with a Section 64 project grant from the Department of Health. The Department renewed the grant for ten years as Wendy’s work was important and valued, but it became inappropriate to keep supporting the helpline through the Section 64 scheme. It is for Primary Care Trusts, working in partnership with their Strategic Health Authorities, local service providers and stakeholders to provide services for their local populations, including for women who are worried about their familial risk of breast cancer.

The helpline has provided an invaluable service to thousands of women over the years, and is supportive of the implementation of the NICE guideline Familial breast cancer (2006).

Wendy’s commitment to the helpline and the thousands of women she helps is outstanding, and she is well respected in the genetics community. We wish Wendy every success in attracting the modest funding she requires to maintain this valuable service.

Yours sincerely

Tim Elliott
Team Leader: Cancer Screening and Male Cancer
Cancer Policy Team

GUYS AND ST. THOMASES NHS TRUST

October 2005
Dear Wendy

We are writing in support of your quest for continued funding of the Hereditary Breast Cancer Helpline. Many patients from the South East Thames region have made use of the support that this helpline has provided over the past 9 years.

Having the opportunity to talk to someone who has experienced the difficulties of living with a family history of breast cancer and who has personal knowledge of the dilemmas and issues involved in considering prophylactic surgery is extremely important for many women in this situation. There is no other helpline service which enables women to talk to someone who can really understand what they are going through from a personal perspective. In addition, for many women it is reassuring to learn that you can put them in touch with other people locally to them.

For many years you have provided a ‘patient’s voice’ in the developing field of cancer genetics and, at a time when service users views are increasingly important in planning and implementing services, it is essential that your important work continues.

Please do not hesitate to contact us if there is any more we can do to help.

Yours sincerely

Ms Chris Jacobs Dr Gabriella Pichert
GENETIC COUNSELLOR CONSULTANT IN CANCER GENETICS

Guys and St Thomas’ Hospital

Our department often refers patients to you helpline as another source for information and know many who have benefited from it. Patients’ information needs are always met better by targeted information, but the choice on the internet is too vast to handle. The Helpline acts as a personal filter to help patients in their search and we would want to see the support of your helpline continue in the longterm.

Yours Sincerely
Dr Louise Izatt

Lead consultant in Cancer Genetics

UNIVERSITY OF ABERDEEN
Feb 2004

Dear Wendy

RE: Further support for the Hereditary Breast Cancer Helpline

I would like to express our department’s complete support for your activities with the Hereditary Breast Cancer Helpline and its continuing usefulness as a point of contact for our patients. Now more than ever before, with increasing information needs of patients from primary through to genetic services, it is important to have such helplines available. The NICE guidelines on familial breast cancer will be published in March and these again emphasize the importance of fulfilling the information needs of patients including those of support groups, such as provided by the Hereditary Breast Cancer Helpline.

Neva Haites
Professor in Medical Genetics

University of St Andrews
Bute Medical School

Dear Wendy

As you are aware, my colleagues and I in Edinburgh and Dundee regularly refer patients to the Helpline and I know they find it invaluable. As the number of families with identified mutations in BRCA1 and BRCA2 continues to increase, so the frequency with which we find ourselves counseling women about the difficult choices they face is also growing. Your Helpline is a unique resource and your experience in dealing with all the issues surrounding hereditary breast cancer is irreplaceable.

With very best wishes

Michael Steel
Professor in Medical Science

Southampton NHS University Hospital Wessex Clinical Genetics Service

I would like to express my support and particularly that of my patients for the Hereditary Breast Cancer Helpline. Patients value an independent point of contact and the opportunity to talk to someone with first hand experience of some of the dilemmas they face.

Dr Diana Eccles MD FRCP
Consultant in Clinical Genetics

The Institute of Cancer Research Royal Marsden Hospital

Dear Wendy

This letter is to confirm that I very much value your tremendous work in supporting individuals and their families where there is hereditary breast cancer. We find the Hereditary Breast Cancer Helpline invaluable in providing support and well informed
information for patients and their families.

Kind Regards

Ros

Dr Ros Eeles MA; PhD; FRCP;FRCR
Honorary Consultant in Cancer Genetics & Clinical Oncology
Head of Cancer Genetics Unit Royal Marsden NHS Trust

Nottingham City Hospital
Centre for Medical Genetics

Dear Wendy

This email is to give the strongest support for you to be enabled to continue the helpline. I have met many people who have contacted you first, before having the courage to raise their fears about a family history of breast cancer with their doctors. Your advice and information has been compassionate, effective in encouraging the making of healthy enquiries, and, where the first medical contact was sometimes dismissive, it has given the assertiveness to go back and ask more firmly. Whilst the NHS has its problems, for patient’s advocates to insist on standards for tackling issues like familial cancers, is actually helping to catalyse better services. Even the NHS Direct helpline cannot give the empathy that stems from speaking to a person who has walked the same path. My own team are lucky because of your proximity, also this has made available to me a super teacher for our students. Youyr sessions for the medical genetics module have been very well praised by all who have attended. I will happily write to the relevant people in the DOH about your helpline’s value. Your energy has been the essential ingredient
Best Wishes Sandy Raeburn

Prof Sandy Raeburn

James Mackay Clinical Genetics Addenbrookes

I am aware of the large number of calls your helpline has handled over the last few years. I am aware of a number of patients whom I have seen in my clinic who were at the end of their tether when they contacted you and you were able to steer them in the correct direction for which they were very grateful. I think the service you have established fits in very well with the recent political changes within the NHS and is very valuable to patients.

Centre for Life Newcastle

‘I think that the service that you provide for families with an inherited tendency to breast cancer is very important. As you know I have suggested to several of my patients that they get in touch with you and all have found this very useful. I think that people with a family history of breast cancer can have difficult decisions to face and although I regard this as part of my remit to provide them with information and support, I recognize that their experiences can be very isolating and that it helps enormously to talk to someone who understands what they are going through. I therefore think that you helpline should be provided with the necessary funds to continue and would like to express my strong support for what you have done.
Best wishes Fiona Douglas (consultant clinical geneticist)

NHS GRAMPIAN

Dear Wendy

I am writing on behalf of the North of Scotland Regional service in support of the Hereditary Breast Cancer Helpline.

We feel that this is an invaluable resource for both ouyrselves and our patients, The Helpline provides a source of advice which is independent of our genetic sevice and therefore regarded by our patients as being unbiased. It is particularly helpful for women to be able to talk to others who have been in a similar situation to themselves and have had to consider similar decisions for their healthcare.

We feel that this is an important service which adds to the quality of care that we are able to provide.

Dr Helen Gregory

WEST MIDLANDS REGIONAL CLINICAL GENETICS SERVICE

Clinical Genetics Unit

Birmingham Women’s Hospital
Metchley Park Road
Edgbaston
Birmingham
B15 2TG

Tel: 0121 627 2630
Fax: 0121 627 2618

 

1 December 2008

Dr Emma Woodward MRCP PhD

Wendy Watson
Hereditary Breast Cancer Helpline
Dear Wendy

I am writing to express my support of The Hereditary Breast Cancer Helpline. The expertise available provides important accurate information and advice to those with an increased risk of developing a hereditary breast cancer. Furthermore, reassurance is also given to those found not to be at increased risk thus reducing referrals and hence workload for the NHS. In addition, members of the medical profession also benefit from this resource as appropriate information may be given to suggest when referral may or may not be indicated. Such a service is not available elsewhere and it is invaluable in terms of providing support and accurate information for patients and their families. I would request that funding is provided for it to continue.

I would request that funding is provided for it to continue.

With best wishes

Yours sincerely

Dr Emma Woodward MRCP PhD
NIHR Clinician Scientist and Honorary Consultant in Clinical Genetics

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