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 there.

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

http://www.britishsarcomagroup.org.uk/

Dorset Macmillan Patient Information Service

Macmillan Patient Information Project is piloting 4 information and support services for anybody affected by cancer:

These services offer a listening ear, health and wellbeing advice and information, signposting to local services and groups and referrals to advocacy or welfare and benefits services.  No appointment required.  Feel free to pop in.

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

Statement by Poole Hospital NHS Foundation Trust

At its last public meeting, the Dorset Clinical Commissioning Group (CCG) published its proposals as to how health services in Dorset should develop in the future and agreed that their preferred option for the Major Emergency Hospital in Dorset is the site of The Royal Bournemouth Hospital (Option B).

Within Poole Hospital, we have been reflecting carefully on this announcement, and given that this is such an important issue, we have taken time to discuss this together before responding to the CCG.

The most important thing that we have to remember is that things really cannot stay as they are – the current service configuration is not clinically or financially sustainable. We don’t have the finances in Dorset to maintain the current arrangement long term, and even if we did, we couldn’t recruit all the staff that would be needed. We also know that as a health and social care community, we can improve outcomes for patients by working together differently.

Poole clinicians have played an active part in the Dorset Clinical Services Review, and support the new service models that have emerged from it. Our staff have also been working very closely with partners in The Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust and Dorset County Hospital NHS Foundation Trust as part of a new national programme – the Acute Care Vanguard initiative – aimed at improving services. We are enjoying this closer joint working, and look forward to continuing in this way with all our partners. However, we have a number of concerns regarding the CCG preferred site option.

Overall, we were very disappointed that the CCG did not select Poole Hospital as its preferred site for the Major Emergency Hospital, given our more central location in Dorset, our history as the main “Accident Centre” in the east, our lead provider role for maternity and paediatric services in the east, and our role as the designated Dorset Cancer Centre. We already provide the vast majority of the services that have been specified for the Major Emergency facility.

Given that 93% of our inpatient work is emergency, Option B represents a major change from our current portfolio of services, and a significant change within the Dorset health community.

We fully accept that either option can be made to work, but in our view, Option A (that is, siting the Major Emergency facility at Poole Hospital) is the better option.

There are two important service issues that we believe should be reviewed and tested further as this work progresses:-

  • We are concerned that the preferred option has been identified in advance of any firm agreements relating to the future of maternity and paediatric services in the west. A recent review carried out by the Royal College of Paediatrics and Child Health has reaffirmed that maternity and paediatric services at Dorset County Hospital are not sustainable on a stand-alone basis in the long term. The Report identified two different options for the Trust – either to establish a joined-up service with Yeovil District Hospital, or to establish a joined up service with east Dorset. The two Trusts have been asked to work together to reach agreement within a maximum of six months, but if this is not possible, work should commence on joining up with the east.

If patients (adults or children) are required to travel to the eastern side of the county, it will be quicker and easier for them and their families to attend Poole Hospital rather than the Royal Bournemouth Hospital. We believe that this is such an important issue that it should be resolved before any final decision is made concerning the best location for the Major Emergency Hospital.

  • We are concerned that in pursuing Option B, cancer services for the people of Dorset may become fragmented. Within Poole Hospital, we currently have all the services and facilities on site to support the delivery of cancer services for the population – including radiotherapy and chemotherapy services, haematology and oncology beds, and a Level 3 Intensive Care facility. Whilst other hospitals in Dorset provide some of the treatments and/or part of the patient pathway, as the Dorset Cancer Centre, we are the only hospital to have all these facilities sited together.

Pursuing Option B will mean that these services are no longer all together, and the Cancer Centre multi-disciplinary team will no longer be based in one unit. In a small number of cases, patients may need to be transferred between the two hospitals.

We recognise that this can be made to work, but there will be extra costs involved in mitigating these problems. In our view, the situation could be avoided if Option A were selected and Poole Hospital were designated as the Major Emergency Hospital. We believe that this is a very important issue, and as such, we have asked the CCG to carry out further work to assess the impact on cancer services under each option.

As well as these concerns, we have a number of questions as to how the two options have been scored – for example, how the Bournemouth site has been scored as being more accessible, and how both options have been scored equally for deliverability. We shall be working with the CCG to understand these better.

In highlighting these issues to the CCG, it is hoped that we might develop a better understanding of all the “pros and cons” of each option, and that in doing so, there will be more informed discussion when the formal consultation process starts later this year. At the end of that consultation, once the final decision is taken, we will work with the CCG and all other partners to implement these changes together.

In the meantime, it is important to remember that these are all long term changes to the healthcare landscape, and the priority for Poole Hospital will be to continue providing great care for our patients. At the same time, the priority for our health community must be to develop robust, integrated community services outside the hospital setting. This is needed to enable us to meet the projected increase in demand for health care, without the need for more beds.

If we are asked to develop as the Major Planned Care Hospital, Poole Hospital will benefit from considerable capital investment, and will continue playing a vital role in east Dorset – introducing innovative new ways of working with GPs and the community, and providing all the routine planned care for the patch. Poole Hospital has a bright future, whichever option is chosen.

PRESENT: Expression of interest by patients

Please find attached an opportunity to

 Have your say: Opportunity to help design a webpage for healthcare to improve services

Expression of interest by patients

I understand that they are planning to run several focus groups across the Uk if there is enough interest

Please pass this on to anyone you feel might be interested.

Tracy Street
Macmillan involvement Coordinator
South West England
Covering: Devon, Cornwall & the Isles of Scilly, Avon & Somerset, Wiltshire, Dorset, Hampshire, Isle of Wight and the Channel Islands.

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 Help to save the sarcoma Clinical Reference Group which I strongly agree with.

Update: Statement from Sarcoma UK


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.