LONG TERM CONDITIONS E-NEWS
APRIL 2014
LOCAL NEWS
Meeting about PIP assessment
Island MP Andrew Turner has arranged a public meeting with Atos Healthcare who have been
carrying out independent medical assessments for health related benefits paid by the DWP
since 1998. This includes assessment for Personal Independence Payment. Mr Turner set up
the meeting after establishing that over 100 Island residents are waiting for (PIP)
assessments. No payments are made under PIP until the assessment and decision making
processes have been completed, which may lead to financial hardship in some cases. The
meeting will take place at 10.00am on Friday 25th April at the Riverside Centre giving
Islanders the opportunity to ask questions about the PIP system. Those speaking at the
meeting are experts in the PIP process but will not be able to deal in any depth with
questions about Work Capability Assessments for Employment and Support Allowance
Telephone Support Service for long term conditions
Help and Care ran a pilot telephone support service on the Island last year for people with
certain long term conditions. The service has now been extended to anyone with a long term
conditions. The service provides advice, information and support to people living w ith long
term conditions. Trained volunteers will telephone a person between 6 and 10 times to have
a general chat and help them access the support and information that is available to help them
managed their long term conditions. This could range from details about local support groups
to health factsheets, depending on their individual needs. The service is available to all Isle of
Wight residents living with a long term health conditions and can be contacted on 522609.
RESOURCES
My cancer treatment website
Macmillan has partnered with the NHS on a unique website www.mycancertreatment.nhs.uk
The website helps patients and their healthcare providers make informed decisions about where to
be treated in England. It provides detailed assessments and national benchmarking. You can search
and compare most cancer services in England, whether patients are newly diagnosed, seeking
reassurance, or looking for a second opinion.
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To find out more, view the overview presentation follow this link
http://prezi.com/oc7zvqixwpkx/mctwebsite/?utm_medium=email&utm_source=Macmillan+Cancer+Support&utm_campaign=3960717_
Mac+Update+April+2014&dm_i=FY7,2CW3X,FR8SHS,8K1DT,1
or you can download leaflets and posters here http://be.macmillan.org.uk/be/s-188-tests-andtreatments.aspx?utm_medium=email&utm_source=Macmillan+Cancer+Support&utm_campaign=39
60717_Mac+Update+April+2014&dm_i=FY7,2CW3X,FR8SHS,8K1DR,1
Links to these resources have also been added to the project Pinterest Board here
http://www.pinterest.com/ltccaiw/
Your health, your way
Living with a long-term condition brings challenges and it's important to have the confidence,
support and information to take control of the condition. Your Health, Your Way provides a guide to
self care as part of the NHS Choices website This guide will gives lots of advice and practical
information. A simple self assessment tool can be used as a starting point to help individuals find the
information they need. See http://www.nhs.uk/planners/yourhealth/pages/yourhealth
The site provides ideas for:
 Healthy lifestyle support: helping you improve your diet and exercise regime
 Information: advice about your condition and its treatment
 Training: helping you feel more confident about living with your condition
 Tools and equipment: making life easier at home
 Support networks: help with finding people to share your experiences with
CAMPAIGNS
New report on driving neurological service improvement launched
The Neurological Alliance has launched a new report, Going the Distance which takes a critical look
at how neurology is represented in the health and social care quality improvement system.
It is two years since the Public Accounts Committee report on services for people with
Neurological Conditions, which highlighted a profound lack of accountability for neurology services
at all levels of the health and care system to the detriment of patient outcomes, quality of care and
value for money. A National Audit Office progress review on neurological services is anticipated
later in 2014 and this report provides a overview of neurology’s place within the new system of
incentives, accountability and quality measures introduced under the NHS reform programme.
The report recognises that major developments that have taken place recently for neurology,
including the establishment of a strategic clinical network for neurological conditions and identifies
five key tests to assess whether progress is on track to create the conditions for a successful
national neurological service improvement drive.
The report awards a star rating for the performance against each test and finds that currently, the
health and social care system is far from meeting the grade on any. To ensure that the Government
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and health and social care system can report full marks against each test by this time next year, the
Alliance has issued a series of national calls to action, which, if adopted, they believe will give
direction to, and guarantee accountability for the urgent neurological service improvement drive
called for by the neurological community, the National Audit Office and Public Accounts
Committee.
Commenting on the report, the Neurological Alliance’s Chief Executive, Arlene Wilkie, said:
“Neurology is at a crossroads. There have been some hugely positive developments in recent years,
including the establishment of a strategic clinical network, the appointment of a National Clinical
Director and the launch of the first neurological dataset. But these initiatives, hard won by the
neurological community, will not alone deliver what people with neurological conditions urgently
need – real change that lifts services up to the standard we would expect for people with other life
changing conditions.
“Our report shows that, behind the scenes, neurology still has a long way to go. We need the
Government and national NHS bodies to knuckle down and go the distance on neurological service
improvement. By building on the solid foundations that they have put in place over the past two
years, we are confident that real change can happen.” The report can be found here
http://www.neural.org.uk/store/assets/files/376/original/Going_the_distance__national_calls_to_action_-_March_2014.pdf
Liver disease: today's complacency, tomorrow's catastrophe
This report from the All Party Hepatology Group reveals a consensus across the medical
community on the urgent need for action on liver disease. It finds that deaths from liver disease in
England have risen 40% between 2001-2012. The report with recommendations can be found here
http://appghep.org.uk.dedi452.your-server.de/liver-inquiry-2014/
Long-term lung cancer survivors ten times more likely to get new cancer than breast
or prostate survivors
A report from Macmillan Cancer Support reveals significant variation in survival and the long-term
impact on survivors’ health for breast, prostate, lung and brain cancers. Lung cancer survivors in
England alive five years after diagnosis are ten times more likely to develop a new cancer than those
with breast or prostate cancer, according to a new report.
Cancer's Unequal Burden report – based on research by Macmillan in partnership with Monitor
Deloitte and Public Health England’s National Cancer Intelligence Network – reveals the variation
in lung, breast, prostate and brain cancer survival and the risk of developing another type of cancer
or long-term health condition.
Despite the fact that one- and five-year survival rates for breast and prostate cancer have improved
significantly in recent years, the research shows that only one in five (20%) women with breast
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cancer and one in four (25%) men with prostate cancer will actually survive both long-term and in
good health. The research also shows that some cancer survivors are at an increased risk of
developing other serious health conditions.
Macmillan Cancer Support is urging NHS leaders and GPs to adopt the solutions in the Cancer’s
Unequal Burden report and use the research to better plan cancer services. These include:
• Improving early diagnosis
• Providing equal access to the best available treatment
• Implementing the ‘cancer recovery package’
• Encouraging people with cancer to be physically active.
The report can be found at:
http://www.macmillan.org.uk/Documents/CancersUnequalBurden_2014.pdf
Supporting employees who are caring for someone with dementia
Dementia is becoming an increasingly significant issue in the workplace, as the population ages,
more and more people are combining work with caring for a loved one. Carers UK and Employers
for Carers carried out a survey to find out the impact of working while also caring for someone
with dementia. A report sets out the key findings and emerging issues from these surveys and
concludes by making 10 recommendations for employers, health and social care services and
government to take to facilitate better support for employees who are caring for loved ones with
dementia. The report can be found here
http://www.carersuk.org/media/k2/attachments/Supporting_employees_who_are_caring_for_some
one_with_dementia.pdf
Improving wheelchair services
Wheelchairs enable many people to live fuller lives, yet wheelchair services provided by the NHS
often fall short of meeting the needs of wheelchair users. In an attempt to redress that, NHS
England is working with others to improve the way in which they can support all wheelchair users.
Sir David Nicholson made it his pledge for NHS Change Day 2014to bring wheelchair users
together with NHS clinicians and managers, and with third sector organisations, to improve
services across England. The Wheelchair Summit, held on 25th February brought these groups
together to look at the problems with current wheelchair services and to identify what should
happen locally and nationally to improve services. Those who attended the summit together
highlighted areas of improvements and made recommendations where action is needed. Their
recommendations
can
be
found
here
http://www.england.nhs.uk/wpcontent/uploads/2014/03/whlchr-summit-act-plan.pdf
POLICY NEWS
Right to ‘ask’ for personal health budgets begins
From 1 April 2014 , people with complex health care needs have the ‘right to ask’ for a personal
health budget. The scheme is being rolled out across the country after the budgets were trialled in
a national pilot programme between 2009 and 2012 at sites all over the country. Clinical
Commissioning Groups are preparing to ensure they are ready to provide eligible patients with all
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the information they need and to provide the budgets as an option from October. Taking up a
personal health budget will be optional, and anyone who does not want to manage their healthcare
needs in this way can leave their care arrangements as they are now.
Initially personal health budgets will be available to people who have significant health needs and are
eligible for NHS funded Continuing Healthcare. They can ask their NHS team to provide their care
through a personal health budget.
A personal health budget is an amount of NHS money available to some people with long term
conditions to meet their healthcare and wellbeing needs. People design and agree a plan with their
healthcare team that shows how they will use the budget to meet their goals, which could include
therapies, personal care and equipment. There are a number of ways these budgets can be
managed.
The budgets were trialled in a national pilot programme between 2009 and 2012 which showed
that they can lead to better quality of life and psychological wellbeing, and, particularly for people
with complex healthcare needs who use a lot of NHS services, led to a reduction in hospital use.
The Government’s Mandate to the NHS also states that from April 2015 people with long term
conditions who could benefit will have the option of a personal health budget. This policy is
expected to be further developed in 2014/15.
NHS Choice Framework
The NHS Choice Framework brings together information about patients’ rights to choice about
their health care, where to get more information to help make a choice, and how they can
complain if they have not been offered choice. The 2014 to 2015 version reflects changes to
expansions of patients’ rights to choice in the areas of:



General practice
Mental health
Personal health budgets
The NHS Choice Framework will be updated annually, as choice rights expand to new services and
patient groups and can be found here https://www.gov.uk/government/publications/nhs-choiceframework
OTHER SPECIFIC HEALTH ISSUES
Diabetes no longer leading cause of blindness thanks to screening
For the first time in over 50 years diabetic eye disease is no longer the leading cause of blindness in
adults of working age. A new study carried out with Moorfields Eye Hospital and UCL Institute of
Ophthalmology reports on the causes of blindness in England and Wales in working age adults
comparing data from 1999 to 2000 with 2009 to 2010.
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2.5 million people are invited for diabetic retinopathy screening every year. Last year more than
74,000 were referred to hospital eye services for further investigation which led to around 4,600
people with diabetes receiving treatment to help prevent sight loss. Although the diabetic eye
screening programme has made huge improvements in the early identification of diabetic eye
disease, sight loss is still an important public health issue and can affect anyone. Diabetic eye
screening does not look for other eye conditions and it is important for all people, whether they
have diabetes or not, to visit their optician for regular eye checks to make sure that any issues can
be picked up quickly.
The NHS Diabetic Eye Screening Programme, introduced by the UK National Screening Committee
(UK NSC) in 2003, invites approximately 2.5 million people for screening every year. The
programme is shown to significantly reduce the prevalence of sight loss through the prompt
identification and effective treatment of eye disease caused by diabetes.
Think autism: fulfilling and rewarding lives, the strategy for adults with autism in
England: an update
This document aims to set out the programme that the Department of Health and other
government departments will be taking to improve the lives of people with autism, primarily
through taking actions that will support local authorities, the NHS, other public services and their
partners with their local implementation work. It includes a new focus on building communities that
are more aware of and accessible to the needs of people with autism. The strategy can be found
here
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/299866/Autism_Strat
egy.pdf
Pinterest Board for the LTC project
There is a Pinterest Board for the Community Action LTC project available via this link
http://www.pinterest.com/ltccaiw/ The Board is a virtual resource library for local LTC groups and
it will grow over time as I find more useful resources that I can signpost groups to. If you haven’t
used Pinterest before, it is a virtual “pinboard”. It enables you to “pin” links to your different
boards to build a reference of resources for yourself in all sorts of interest areas. Once you pin a
link, it links you back to the original website where you can see the source of the information. You
do not need to be a member of Pinterest to view the LTC project Pinterest boards or find the
original web links which are linked on each individual “pin”. If you want to set up your own boards
you will need to register for Pinterest yourself. You will see that a number of the resources
mentioned in these newsletters feature as pins on the project Pinterest boards.
This bulletin will be produced on a regular basis each month as part of the Long term Condition
Self Help Group development programme co-ordinated by Community Action IW.
For more information contact Elaine Garrett, Project Co-ordinator on egarrett@actioniw.org.uk
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