Information about research and clinical trials

• A search tool to find out about clinical trials: www.nhs.uk/Conditions/Clinical-trials/Pages/clinical-trial
• Find out about the latest research news: www.musculardystrophyuk.org/progress-in-research/news
• National Institute for Health Research Clinical Research Network

Opportunities for research funding

• www.musculardystrophyuk.org/progress-in-research

The South West Neuromuscular Operational Delivery Network (SWNODN) aims to provide health and social care professionals in the South West with a world-class level of knowledge, support and training for working with people with rare neuromuscular conditions.  This will ensure that patients have the best possible care and experience from NHS Services across specialities and are able to access the appropriate support closer to where they live to better manage their condition. 

The SWNODN run a number of events around the region with the remit of sharing best practice and ensuring healthcare professionals are confident when working with individuals with neuromuscular conditions.   

If you are one of the many professionals who work with people with a neuromuscular condition, please ensure you get to hear about our work and events by joining our professionals mailing list (it’s free!).  To join the mailing list, please email: swneuromuscularodn@nbt.nhs.uk

Patients can be referred to the neuromuscular clinics by their GP, Neurologists or Paediatrician via the normal referral route for the hospital that the clinic is held in.

If you are a patient who has had a confirmed diagnosis of a neuromuscular condition covered by the SWNODN, you may already be receiving care from a Consultant Paediatrician or Neurologist in your local hospital. 

Sometimes your local hospital doctor may seek specialist advice from, or refer you to, a SWNODN Consultant Neurologist. 

If you would like further information and advice about attending one of the SWNODN’s neuromuscular clinics, or would like to get in touch with the Neuromuscular Advisor for your area, please contact the Network office.

We are able to offer a complete investigatory process for patients referred to our service. Each patient will undergo consultation, breast palpation and ultrasound. Our uniqueness is that the clinician who examines the patient will perform an ultrasound within the same consultation. Depending on the clinicians findings he/she may well then recommend a mammogram and possibly tissue biopsy (FNA or core biopsy). A significant number of patients referred will not require a tissue biopsy. Clinical Nurse Specialists are present in clinics. Mammography is situated within the same department.

All patients are seen within the government guidelines of two weeks.

Our referral system has two options for your consideration.

1. Care pathway where you suspect a breast cancer diagnosis
2. Care pathway where you do not suspect breast cancer to be diagnosed

Where a diagnosis of breast cancer is suspected we are able to undertake all necessary investigations within the same appointment. A specialist Nurse is available for support for women who have concerns regarding their potential diagnosis. Patients return for the biopsy results. If the patient receives a cancer diagnosis, the specialist nurse meets with the patient/carer for support and assistance (if applicable) with decision making.

If you wish to talk through with a clinician or specialist nurse before you make your referral please feel free to telephone the Bristol Breast Care Centre.

Family History Clinic Referral

Patients are referred by GPs should be clearly marked as Family History, so that they don’t end up in a one stop clinic.

If the referral is specifically for gene testing, then please refer directly to the Clinical Genetics Service at St Michaels Hospital, Bristol.

Although screening would not usually start before 40, we would be happy be happy to see younger women to assess their risk and give them a strategy.

If you have any concerns about your psychological wellbeing, please speak to your Clinical Nurse Specialist or your Consultant, and they can refer you to the Cancer Psychology team.

Keeping Abreast is a breast cancer reconstruction support group.

Their support meetings, held at both  Macmillan Wellbeing Centre, Beaufort House, Southmead Hospital and Gloucester, are informal, relaxed and open to those who wish to gain more information on Breast Reconstruction after a mastectomy.

Family & friends are also very welcome.

Find out more at www.keepingabreast.org.uk/breast-cancer-reconstruction-support-bristol

Support Meetings

Bosom Buddies meets as a group on the first Tuesday of every month at The BAWA Club, 589 Southmead Road, Bristol BS34 7RG.

For more information visit the Bosom Buddies Bristol – Breast Cancer Support group website.

• Know what is normal for you
• Know what changes to look and feel for
• Look and feel
• Report any changes to your GP without delay
• Attend for routine breast screening, if you are over 50

Breast awareness is about becoming familiar with your own breasts and how they change. It is important to know how your body normally looks and feels. Being breast aware is about knowing the usual shape and feel of your breasts and being able to recognise any changes.

There is no such thing as a standard breast and what is normal for one woman may not be for another. Your breasts will also look and feel different over time depending on the time of the month and your age. If you find any changes from what is normal for you go to your GP without delay.

You are not wasting anyone's time.

It is important to know that most changes are not cancer. But, reassurance and advice will always help, and the sooner a possible cancer is reported, the more simple treatment is likely to be.

Changes to look for:

• A change in size or shape
• A lump or thickening
• Puckering or skin dimpling
• Nipple becoming drawn or changing direction
• Bleeding or discharge from the nipple
• Rash on or around the nipple
• Sudden roughness of the skin
• Swelling under the armpit or around the collar bone
• Constant pain in one part of your breast or in your armpit

For more information visit NHS Cancer Screening website.

The Breast-cancer Unit Support Trust (BUST, Charity No. 1117508) is run by a volunteer committee, who have all been breast patients.

Come and join the BUST Members Support Group. The group is held four times a year and includes refreshments and a talk by a professional on the latest developments in technology, diagnosis and equipment.

There is also the opportunity to be updated on local BUST fundraising events and to talk to women who have been treated for breast cancer.

Everyone is welcome; partners, friends, family and those just interested in coming and joining in a very relaxed evening.

BUST also fundraises to buy advanced medical equipment for the Bristol Breast Care Centre (BBCC) based at Southmead Hospital.

They are able to give talks to groups about Breast cancer and how to examine for breast abnormalities and have spoken to students in schools, retired people and all ages in between. 

The Prosthesis fitting Clinic is offered once a week on a Monday morning at the Macmillan Wellbeing Centre, Southmead Hospital, for all patients that require a breast prosthetic/bra fitting.

Run by our experienced fitters, Helen Lewis (Trulife) and Tracy Emerson (Amoena), every patient is offered a prosthetic post-mastectomy free of charge.

Approximately 5-6 weeks post surgery, dependent upon wound healing and the fact that any post–operative swelling has settled, you will be offered an appointment for the fitting clinic. Prioir to this a temporary very soft form prosthetic is available to all patients undergoing mastectomy surgery without reconstruction – these soft prosthetics are fully washable, and can be worn as as soon after surgery as is comfortable.

 

If a problem should arise with your prosthetic, please phone through to the Bristol Breast Care Centre and have the relevant information to hand – we usually ask for the make, Amoena or Trulife, and the number and size of the prothetic you have been suppled with (these are usually clearly printed on the box it will have been suppled in). We can then reorder a replacement to be delivered straight to your home address.

Similarly, if at any point the prosthetic becomes too big or too small, usually due to weight gain or weight loss, we can rebook you to the fitting clinic for another fit.

The Breast prosthetics usually get a replaced approx. every 2 years.