Category Archives: Blog

Dr Rachael Brastock

Dr Rachael Brastock was our guest speaker this week at our support group. She is the Macmillan Specialist Clinical Psychologist for Dorset and is based at the Weldmar Hospice in Dorchester. She is such a warm person and gave us an excellent presentation about living with cancer. Rachael outlined some theories about being diagnosed and emotional well being and coping. She shared some useful strategies that we, as patients and carers, can use to help cope with anxiety and the uncertainty of cancer. Rachael explained the different levels of psychological support that is available to us in Dorset. It is patchy and she was due to meet with the Dorset Clinical Commissioning Group and Poole, Bournemouth and Dorchester hospitals to discuss this in a bid to improve availability.

Those of us in the group who have accessed psychological care agreed it proved beneficial  and that is is hard to admit to yourself that you are not coping and need help.

Steve has added Rachael’s presentation to our website here. You may be mystified to see photos of chocolate éclairs which Rachael dispensed to us and we took part in an exercise which was illuminating – let me just say “There is no learning without doing.”Tricia

Wessex Cancer Trust Bournemouth

I dropped into the new Wessex Cancer Trust support centre in Bournemouth. It’s a lovely facility and the staff are very welcoming. It’s open Tuesday, Wednesday and Thursday 10 – 4 pm and offers befriending, counselling and complementary therapies.

There is some parking on site. I did find it tricky to find as there is no obvious signage and looks like an office block. You have to push a buzzer to gain access and there is a lift. Look for the building called Fairview. (If you are driving it’s half way along Hinton Road on the left hand side.)

I took some of our support group leaflets and the manager Debbie is going to check with head office to see if they can display them.

https://www.wessexcancer.org.uk/bournemouth

Bournemouth Cancer Support Centre
Fairview House
17 Hinton Road
Bournemouth BH1 2EE
T: 01202 315824

Cancer Research UK: Take part in a live podcast!

Would you like to attend a Cancer Research UK event in Southampton? On Tuesday 26th January 2016 1- 4 pm they are hosting an event for patients and carers at Southampton University in the Nuffield Theatre.

Find out how CRUK fund their research and how they involve people in their work and speak to staff and researchers from the centre

Read more information below and click on http://tinyurl.com/CRUKSouthampton2015 to register for tickets for the event. Lunch is provided and also travel expenses will be covered.

Tricia Moate

Event Details

Every year, Cancer Research UK raises funds for vital and life saving research. This research helps us get one step further to our goal of Beating Cancer Sooner.

Funding research can be a complex process. That’s why we’ve enlisted the help of some friends to explain how we do this in a really fun and interactive way. We will be exploring the funding process and looking at the opportunities for involving people in our work through a 60 minute podcast. This will be a great opportunity to:

  • Learn about how Cancer Research UK funds its life saving work
  • Get an overview of how we involve people in our work and our research
  • Speak to the researchers and staff at the centre
  • Participate in an innovative science podcast
  • Give us your views on our processes and work
  • Give you the opportunity to join Your Involvement Network and get involved

http://tinyurl.com/CRUKSouthampton2015

I thought care campaign would fizzle out after two Tweets!

NHS England tells the story of Dr Kate Granger’s, a terminally ill sarcoma patient, #hellomynameis campaign which is now two years old.

#hellomynameis isn’t just about introducing yourself to your patients, it’s about see the person behind the condition, treating them as a person with their own priorities, fears and anxieties. And really understanding them and treating them as you would if they were a member of your own family

Kate Granger’s website is The Other Side & The Bright Side | True Stories

Give As You Earn Charitable Donations

I was asked by an accountant:

Is there a good charity for Sarcoma you can recommend me to add to Give As You Earn (GAYE) scheme at work?

That’s an easy one to answer! This is my reply, including a link to the accounts:

Yes there is. Sarcoma UK is the one that our support group is part of and they give us an annual grant. Their CEO came to talk to us in May. They are excellent, do a great job and spend their income wisely. Their annual report, review and accounts are at How we spend your money.

From How we spend your money:

For every £1 spent on Fundraising £6.22 was raised.

78% of income was spent on Charitable Activities
(Awareness; Research; Support & Information)

Bournemouth University Carer and Service User Partnership

Would you like to get involved in education and research within the School
of Health and Social Care at Bournemouth University?

The Carer and Service User Partnership (CSUP) team led by Angela Warren and
Peter Atkins are actively recruiting patients and carers whose experience can
benefit the students and influence future Health and Social Care workforce. I
met Angela this week and she was extremely helpful and charming. She said that
the partnership has been running for ten years. There are many ways we can get
involved including:

  • Speak to groups of student nurses, social workers, midwives,
    physiotherapists etc about your experiences;
  • Take part in meetings about what students should learn, help academics
    plan courses and develop resources;
  • Take part in interviewing and selecting students;
  • Participate in research projects.

Angela and Peter provide induction, training and support. Travelling
expenses are reimbursed and in addition current payment rate is £10 per hour. If
you do not wish to receive payment for your time, you can request that the money
be donated to a registered charity of your choice (eg Sarcoma UK).

Go to www.bournemouth.ac.uk/csup for more  information and an application form.

Tricia

Afterglow radiation support group

Last week I met Mandy Sydenham a radiographer from Poole Hospital
Radiotherapy department and they are starting up a support group for patients
who have had radiotherapy. They recognise that many patients are having long
term toxicities  and they want to offer support and help, but it’s also for
patients who have finished radiotherapy recently and may be having short term
side effects.

The group will be on the second Monday of every month from 2 – 4
pm at The Grove hotel, 2 Grove Rd, Bournemouth BH1 3AU (01202 552233) www.thegrovebournemouth.co.uk

They haven’t got any leaflets about the group yet as it is so new – their first meeting is on 8th June 2015.

Tricia

Royal Marsden Patient and Carer Research Panel

Are you a patient (or carer) with the Royal Marsden and would like to get involved with an active role in shaping the Trust’s future research projects?

Dr Natalie Pattison, Trust Lead for Patient and Public Involvement, explains that it’s important to hear the views of the people the research will potentially affect, to ensure the patient is at the heart of the decision-making process: “This is about empowering individuals and communities so that they can play a greater role in shaping healthcare research.
“Patient and public involvement helps us identify what’s important to patients and the public, and how we can improve the way we run clinical trials.”

The panel was set up in 2011 and has already improved research projects being carried out at The Royal Marsden. The panel of up to 20 people meets four times a year to discuss research ideas presented by investigators and to discuss priorities. They also undertake email reviews of documents to make patient information more comprehensible for laypeople.

They are currently looking for people to join the panel. I have been a member of the panel since it was started and it is a fascinating experience and it’s a way I feel I can give something back for all the care and expertise I have been lucky enough to receive from the Royal Marsden.

www.royalmarsden.nhs.uk/about-royal-marsden/our-research/patient-involvement/patient-and-carer-research-review-panel

Language of diagnosis and prognosis in cancer

Very interesting programme on Radio 4 Word of Mouth this week –
Chris Ledgard investigates three situations where the precise use of words is crucial. He speaks to a cancer specialist and a woman in remission from the disease about the language of diagnosis and prognosis. How do doctors balance the need to be sensitive with the need to be accurate? Is the word cancer itself still one that people prefer not to use? ……….
and you can listen again here: http://www.bbc.co.uk/programmes/b04980f3