NEWS ALERT: We seek change in Jersey

Mon 14 March 2016

NEWS ALERT: Monday 14th March 2016

We here at the Jersey brain Tumour Charity would like to issue the following statement following the UK House of Commons Petitions Committee report on Funding for Research & awareness into Brain Tumours and in turn urge the States of Jersey to review and act on the recommendations working with us to make a real difference here on the island:

STATEMENT:

Following recent national headlines reporting the findings of a House of Commons Petitions Committee review of funding for research into brain tumours, the Jersey Brain Tumour Charity is urging the States of Jersey and local health officials to review the findings.

Kevin Pamplin, Business Manager for the Jersey Brain Tumour Charity,
said: “While these recent findings relate to the UK mainland, the lack of funding into brain tumour research and awareness is certainly something we see lacking at a local level and we are taking this opportunity to highlight this issue and ask the States of Jersey to give it consideration.

“Through our experience supporting Islanders, with both malignant and benign brain tumours, we are aware of gaps in knowledge and support in Jersey, and we are urging the States of Jersey to consider the role it has to play in leading awareness of the impact of brain tumours on our own community. We’d like to see more support in raising awareness of brain tumours amongst GPs and other healthcare professionals here in Jersey, and a review into the current processes for supporting brain tumour patients.

“The findings of the Petitions Committee and its report to the UK Government couldn’t come at a better time as we are in the process of organising Jersey’s first brain tumour conference which is planned to take place here on 30 September 2016. At this stage we can confirm that one of the key speakers will be top London based neurosurgeon Dr Neil Kitchen, who is keen to see the changes we are calling for and help us support more Islanders so they don’t have to face this life challenging experience alone.

“The Jersey Brain Tumour Charity continues to do its part in raising awareness and supporting Islanders as much as we can; we are proud of the support we have already received from the general public but we wish to work together with everyone to make sure the best possible care and service is provided for those affected by a brain tumour diagnosis, the only way to do that is raise awareness.”

The conclusions of the Petitions Committee report can be found here http://www.parliament.uk/business/committees/committees-a-z/commons-select/petitions-committee/inquiries/parliament-2015/funding-for-research-into-brain-tumours/

A summary of the findings relevant to Jersey:

45. A number of measures are needed to address the needs of brain tumour patients. The first step should be to increase the awareness of brain tumours and to increase the numbers of tumours diagnosed early. It is clear that brain tumour patients are being failed repeatedly.

46. Earlier diagnosis could improve survival rates and improve patients’ quality of life. Earlier diagnosis could also help to increase the numbers of patients able to take part in clinical trials as well as the diversity of tissue samples available for researchers. Moreover, it would clearly be less distressing for patients and their families if they could be diagnosed before their symptoms become so severe that they present at Accident and Emergency.

47. Earlier diagnosis will rely to a large extent on increasing awareness amongst GPs and other front line healthcare professionals about the symptoms of brain tumours.

Recommendation:

48. The UK Government should provide greater leadership and support to raise awareness of brain tumours amongst GPs and other healthcare professionals in order to increase earlier diagnosis of brain tumours. It should:

* Consider the evidence in this report about the differences between the HeadSmart guidance for GPs and the recently updated National Institute for Health and Care Excellence (NICE) guidelines for the recognition of and referral for suspected cancer in children, young people and adults, and ensure that NICE reconsiders its guidelines.

* Work with professional bodies and Clinical Commissioning Groups to ensure that GPs and other health care professionals receive appropriate training, perhaps as part of their Continuing Professional Development, on the symptoms of brain tumours.

* Take urgent steps to raise general awareness of brain tumours—either as part of the Be Clear on Cancer Campaign, or as part of other public health awareness initiatives.

END

For any interviews or further information please contact Pauline Ramskill at Direct Input, telephone 735253 or Kevin Pamplin, Jersey Brain Tumour Charity telephone 510867


Notes to editors

Jersey Brain Tumour Charity services are highly tailored to the needs of our patients to ensure we provide high quality and consistent support during times of uncertainty. Here are our key “projects” that are vital to those we support all year round:

* Our monthly ‘brainy buddies’ support group is advertised regularly through the local media. It’s designed to extend the reach of the current support offered and promotes empowerment and independence through facilitating shared experiences and peer support for patients, families and friends. It’s friendly, informal and inclusive with a key speaker provided from other agencies or areas of interest.

* Our 24/7 free phone line offers round the clock support to patients, carers, families and the wider community.

* Specialist face-to-face emotional and practical support ensures our patients’ needs are met and enables us to sign-post to other agencies if necessary.

* Providing critical financial support to meet the diverse needs of our patients. This varies from low level financial assistance through to funding specialist nursing care for a 15 year old patient requiring lifelong care.

The impact of what we do

Depending on the type of tumour, patient survival rate is high. We understand the impact of a brain tumour is far reaching and can leave patients with long term disabilities such as memory loss, visual and hearing impairment, balance, emotional highs and lows, reduced resilience and tolerance, depression and physical disabilities in both the short and long term.