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.
The London and South East Sarcoma Network (LSESN) Sarcoma Advisory Group has just published its January Newsletter and it includes details of our group’s meetings.
SAG Newsletter Dec 15
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 NCRI poster
Click to see the poster
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
- 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.
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.