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.

New sarcoma service specification

NHS England are asking for comments on a new sarcoma service specification which sets out how sarcoma should be treated. The principle underlying the specification is that all sarcoma patients should be referred to a specialist sarcoma centre. Those of us who have some experience of sarcoma treatment know how important this principle is.

Please go to Sarcoma UK’s site Speak out on how sarcoma services are set up in England! and follow the link to have your say – the form is very easy to complete.

The Service Specification says:

Because of the rarity of sarcomas, patients may receive inappropriate treatment by non-skilled practitioners before the diagnosis has been made and the need for specialised care has been recognised. Depending on where sarcoma patients live in the England, there is variability in availability of specialist care, and in access to that care. A significant number of patients are treated outside of specialist sarcoma services.

The aim of the service is to improve outcomes for all patients with sarcoma by ensuring that all patients will be referred to specialised sarcoma services and that all patients have access to the highest quality care regardless of where they live or the location of the tumour.

Patients’ Priorities For Cancer Research: A Pilot Study

Below is the PACER poster which was presented at the National Cancer Research Institute conference in November. Dr Sing Yu Moorcraft, a Clinical Research Fellow, carried out a pilot study at the Royal Marsden. She asked cancer patients what they thought were their priorities for research and the results are very interesting. She is hoping to take the study forward by now carrying out the study at more hospitals to gain more opinions.

PACER
PACER NCRI poster
Click to see the poster

RNOH Patient Partners

The Royal National Orthopaedic Hospital (RNOH) Stanmore involves patients via its Patient Partners programme to help improve their service. This involves meetings both at Stanmore and via virtual discussion groups. Discussing with RNOH and other patients what is good about the hospital is very rewarding. Best of all they do listen because they have already made changes to the appointments system following criticisms.

You can find out what was discussed at the first virtual session at Patient and public involvement at the RNOH. RNOH are keen to get more patients involved and the link tells you how to do so.

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