All posts by Steve

Sarcoma Patient Pathway Analysis

This paper Sarcoma Patient Pathway Analysis and Recommendations for Service Development won an award for best abstract by the European Cancer Organisation.The introduction to the paper says:

This paper has been prepared in response to the growing number of requests for sarcoma patient views on such matters as expert treatment centres, reference centres, rare cancer protocols etc. Our objective with this paper is to give a clear statement of what we expect sarcoma treatment to look like, how we expect service structures to develop to respond to patient needs, and how national and international referral practice should evolve. The paper is based on a patient pathway which is neither typical nor ideal but which is based on the kinds of treatment options that arise at different times with the majority of sarcoma tumour sub-types.

Details can be found on Sarcoma Patients EuroNet website and the paper can be downloaded here.

British Sarcoma Group Guidelines

BSG are pleased to announce the publication of the latest guidelines for the management of soft tissue sarcoma. As well as sarcoma they include recommendations for other tumours managed by sarcoma teams including fibromatosis, peripheral nerve tumours, and DFSP. BSG hope that the guidelines will help support sarcoma services in the UK.

UK guidelines for the management of soft tissue sarcoma

UK guidelines for the management of bone sarcomas

The guidelines for GIST are currently being edited and will be released shortly, but in the meantime you may find the ESMO guidelines useful.

BSG Board

End of Sarcoma CRG

The NHS has rejected strong submissions that a separate Sarcoma Commissioning Reference Group (CRG) should be maintained and have decided to set up a single Cancer CRG with a minimum of one member with Sarcoma expertise.This flies in the face of Sarcoma UK’s opinion  which I strongly agree with.

Here are the relevant excerpts from the report, which can be found at Engagement Outcome Report

New Cancer Surgery CRG
Minimum 1 member with expertise in each of the following areas: Thoracic cancer, Upper GI cancer, Urological cancer, Gynaecological cancer, Sarcoma, Central Nervous System cancer and Head and Neck Cancer.

Consultation Issue
Strong representation for maintaining separate [Sarcoma] CRG.

You said We did
The majority of responses expressed concern with the placement of certain conditions in an overall CRG or an inappropriate group. A high number of responses showed concern that if proposed changes to merge CRGs are implemented, that existing inequalities will persist or get worse. The examples given most were sarcoma, which is experiencing inequalities because of its rarity, and cystic fibrosis, because of its complexity and difficulty of representing the patient population sufficiently. We believe the changes we have made as a result of the responses to the engagement guide will address these concerns – for example increasing clinical and PPV membership to ensure a broader range of expertise on each CRG. We will clarify how subgroups will be set up and used to ensure expertise in specific areas is retained where this is needed.
We believe that the additional resources and support we are allocating to support CRGs, the greater accountability that the payment of CRG chairs and PPV members brings and the use of subgroups where specialist expertise is required, will enhance access to care and help reduce inequalities.
Sarcoma should have a distinct CRG and not be included under the larger Cancer Surgery CRG We will continue with our proposals however we will ensure that at least one of the eight clinical members of the new CRG has expertise in sarcoma.

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.

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.

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)

Best Places To Work 2015

Carrying on from last year’s Best Places To Work  both RNOH and The Marsden appear in the Health Service Journal’s 2015 list of top 120 places.
Full story at HSJ reveals the best places to work in 2015

The Royal Marsden Foundation Trust
8 July, 2015

Best Places to Work 2015 – Acute Specialist Trusts

  • Full time equivalent staff: 3,528
  • Sickness absence rates: 2.85 per cent
  • Staff recommending care: 89 per cent
  • Staff recommending as place to work: 71 per cent

Loans are on offer to staff at the Royal Marsden Foundation Trust for season ticket travel costs and bicycles. Childcare vouchers are also part of the standard benefits package. Gym membership is subsidised. In the most recent NHS staff survey, 92 per cent of staff questioned at the trust said their role made a difference.

Royal National Orthopaedic Hospital Trust
8 July, 2015

Best Places to Work 2015 – Acute Specialist Trusts

  • Full time equivalent staff: 1,310
  • Sickness absence rates: 2.88 per cent
  • Staff recommending care: 87 per cent
  • Staff recommending as place to work: 71 per cent

The Royal National Orthopaedic Hospital Trust has invested in software that supports staff with dyslexia. It actively seeks to recruit and retain staff with disabilities. Gym and swimming pool facilities exist on site. The trust scored 3.9 out of 5 for engagement in the most recent NHS staff survey.