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

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)

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

The new National Cancer Strategy for 2015 – 20 has been released and you  can read all about it http://www.cancerresearchuk.org/about-us/cancer-taskforce

I was disappointed that I couldn’t  find much about rarer cancers. On page 50 there is a section about the importance of  support groups.

Tricia

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)

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

Tricia

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

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