It’s time to talk

To mark the start of this week, the Halton LINk will be holding an awareness raising event, in partnership with the Halton Carers’ Centre. ‘Why Dying Matters to me’, will be held at the Stobart Stadium from 12.30pm to 3.30pm on Monday 16th May. This event will look at the barriers to talking about death and dying and how we can overcome them.

Why should I talk about death? Isn’t it morbid?

Not at all. We all live and we all die, and life is something to be celebrated through to death.

Talking about dying and death is something people understandably feel uncomfortable about, but it is something we all need to do - otherwise we, or our loved ones, may not die in the way we want. Talking about dying does not make it happen, or happen faster.

We are all fortunate to live at a time and in a society where most people live healthy lives through to old age. Even a hundred years ago, many more people died at a younger age, they tended to die at home, and more died of communicable illnesses and diseases like tonsillitis and tuberculosis. Increased life expectancy and a steep decline in the numbers of deaths from disease have made death a taboo subject.

Today, many more people live to old age and

tend to die outside the home. This means that many people today do not experience a family member or close friend dying until they are into their mid-life, and it is even less common to have seen a dead body.

Society as a whole has never been less exposed to death. As a result, fear of the unknown means that people sometimes avoid people who are ill or dying, and do not feel able to support them.

Not talking about dying and death has many unwanted consequences:

• If relatives and loved ones do not knowa person’s preferences, they may makedecisions about care the dying person doesnotwant

• Close relatives may be unaware of howbest to help and support a person who isapproachingdeath

• Those nearing death may feel isolated,distressed or frightened, which can impactonthelevelofpaintheyexperience

• People may die without writing a will, orrelativesmaybeunsureaboutfuneralwishes

To book your place please call 01928 592405 and ask for Dave Wilson.

For information on the Dying Matters Coalition go to www.dyingmatters.org.uk

16th – 22nd May 2011 is the 2nd Annual Dying Matters Awareness Week. This year’s theme is ‘Why Dying Matters to me’. The aim of the week is to raise awareness and generate debate on dying, death and bereavement, and to increase media and public attention on these issues. As well as encouraging individuals in our society to start the conversation, it will underline the continuing importance of end of life care nationally, regionally and locally.

LINk update

Just a few bits of information on the Halton LINk and our work so far this year.

We now have over 700 local people and organisations signed up as members.

Our Enter and View Team have conducted 10 visits, 9 to local care homes and one to Halton Hospital.

We have produced a guide to NHS Continuing Care. (Download from www.haltonlink.org.uk or call us on 01928 592405)

We held a joint consultation event with the Halton Carers on the DLA Reforms and the changes to Adult Social Care, over 190 people attended.

We took part in a regional LINk event at Aintree racecourse with 6 other North-West LINks.

Taken part in the annual PEAT assessments at Warrington & Halton Hospitals.

Hosted a coffee morning to mark Dignity Action Day (25th February).

The LINk Transition Group now meets regularly to look at the move to becoming HealthWatch in 2012.

LINk reps and LINk support team members have attend numerous meetings and events including:

• PSECMeeting(WhistonHospital)

• PCGMeeting&PEGMeeting(WarringtonHospital)

• RuncornPBC‘UrgentCare’Meeting

• Carers’StrategyGroup

• MidMerseyMedicinesManagement

• HaltonDignityNetwork

• HaltonOPENEventonPersonalisation

• CavendishHighSchoolevent

to name a few!

Issue8-May2011

The HAL Halton LINkNEWSLETTER

The Care Quality Commission (CQC) has now published its second annual report to Parliament on the state of health care and adult social care in England. CQC will publish later this year a further report which looks at health and social care after registration under Health and Social Care Act 2008.

CQC publishes its 2nd Annual Report on the state of care

CQC highlights improvements in the care system but says there are still some areas which have not improved fast enough, and stresses that it is vital that the advances already made become a key component of the newly emerging care system.

The report’s main conclusions are:

Overall there has been major improvement, including in areas that really matter to people. Waiting times for NHS Hospital treatment have shown progress, with the percentage of admitted patients treated within 18 weeks increase up 48% to 86% between March 2007 and March 2008.

Safe care homes - There was a substantial increase in the number of care homes and home care services meeting safe care standards, including safe working practices and hygiene and infection control. However, the report finds that further improvements of medicines management is still needed.

Quality of council commissioning - The quality of care arranged by councils between September 2008 and September 2009 improved, the percentage of people supported in care homes that were rated good or excellent improved by 11%; and 6% for home care agencies. Councils also made significant improvements in adult safeguarding and in maintaining the dignity and respect of people who are in a vulnerable position by commissioning better care. But some organisations still lag behind the pack and there are areas in which services frequently struggle to meet standards.

Key areas of concern highlighted by CQC are:

Safe Care – Too many patients – as many as 40% said they were not told what danger signals to watch for after they went home from hospital. Around 45% reported that they did not have

enough information about the side effects of medication.

Choice and control – Care services showed insufficient improvement in meeting standards relating to choice and control, this has been particularly prevalent in practices observed by our mental health Commissioners. Health commissioners were finding it difficult to balance spending on prevention while funding services for people with high level needs and some mental health services applied security measures in ways that placed unnecessary restriction on autonomy or compromised privacy.

Person-centered services – Councils found it challenging to extend further options for independent living, and community based services have been reduced. The rapid growth of demand for support, especially due to the rising number of older people, has not been matched by growth in the availability for more person centered support. The number of people over 75 who had repeated emergency admissions increased, suggesting a lack of effective community support.

Standards of care and support – The quality of some mental health inpatient services continued to cause concern, for example where the Commission observed over-occupied inpatient wards, lack of one-to-one work with patients, or unnecessary restrictions of liberty.

A copy of the full report can be found at: http://www.cqc.org.uk/stateofcare2009-10.cfm

DLA Reform & Adult Social Care Consultation

Over 190 people attended a consultation event organised by the Halton LINk and the Halton Carers Centre on 2nd February at the Stobart Stadium in Widnes. The joint event was held to give local people the opportunity to respond to two of the recent government white papers that were out for consultation.

The two consultations covered ‘Transparency in Outcomes - A framework for Adult Social Care’ and the ‘Disability Living Allowance Reform’.

The responses from the day were collated and sent in to the Department of Works and Pensions and the Department of Health. A short report is available from www.haltonlink.org.uk

North West Ambulance Service NHS Trust is applying to become an NHS Foundation Trust.

They would like as many people as possible across the North West to join their membership and help them to shape the future of the service. Foundation Trusts will give members of the public ‘a voice’, which can influence change and help ensure that the service continues to meet the needs of all the members of our communities.

NWAS is the largest ambulance service in the UK covering the area from Carlisle to Crewe and encompassing five counties. Therefore it is imperative that the membership represents the population on all levels.

Membership of the NWAS NHS FT is free; you have to be over 16, a resident in the North West and you can be a member of more than one FT. As a member you, your families and your friends, can become as involved as much or as little as you choose, from raising awareness of the ambulance service, becoming a volunteer through to representing communities and standing for governance, the choice is yours.

Interested? To discover more visit theirwebsite www.nwas.nhs.uk; you can alsojointhemembershipon-line.

Alternatively you can contact NWAS formore information at communications@nwas.nhs.ukor08451120999.

A membership form is also available

It’s your service, have your say!

Safe and Sustainable will be working with local parent groups to identify and invite parents and young people who would be interested in taking part.

Dr Sue Hobbins, a paediatrician with expertise in cardiology and a member of the Safe and Sustainable Steering Group, said: “Thesefocusgroupsareanimportantpartofthepublicconsultation.Theyprovidean accessible way for parents and youngpeopletogivein-depthresponses.Toensurethe service is safe and sustainable for thefuture, we are proposing fewer specialistsurgical centres and far more cardiologyservices at a local level to meet youngpeople’songoingcareneeds.Therationaleforchangeissupportedbyleadingclinicians,professional associations and charitiesincluding the Children’s Heart Federationand the British Heart Foundation. Nowwe want to hear what parents and youngpeoplethink.”

The Safe and Sustainable consultation is making robust efforts to consult with

the public who can participate in the consultation by completing a consultation response form before 1 July. Safe and Sustainable has also organised:

• Consultation events taking place in 12locationsacrossEnglandandWales

• Three discussion groups specifically foryoungpeople

• Health impact workshops primarilyfocusing on the needs of vulnerablepeople.

So far over 1,500 have registered to attend public consultation events and over 1,300 people have already responded to the consultation. The consultation runs until 1 July. No decisions about the future of any of the centres under review will be made until after the consultation. A decision on the proposals is expected in late 2011.

To find out more about the public consultation please visit: http://www.s p e c i a l i s e d s e r v i c e s . n h s . u k / s a f e _sustainable/public-consultation-2011.

Young people with congenital heart disease and parents across England are being invited to participate in focus groups as part of the Safe and Sustainable consultation on the future of children’s congenital heart services. In addition to the public consultation events Safe and Sustainable is organising separate focus groups for parents and young people to provide an opportunity for more detailed feedback on the consultation.

Parents and young people: have MORE say on children’s heart services consultation

We want to hear your views

Have you experienced health care, either as a patient yourself or as a carer or friend of someone else within the last year?

In conjunction with Patient Opinion (www.patientopinion.org.uk) we are asking for you to give us your feedback on the services you’ve experienced locally.

What was good? What could have been better? Tell us your story - make a difference, go to www.haltonlink.org.uk/patient-opinion.

You’ll also be able to find out what other people’s opinions are of some of the local services and how they rate them.

Image supplied by kind permission of Jason Lock Photography

Alarming new figures show low awareness of Bowel Cancer symptoms

Independent research commissioned by the charity to mark Bowel Cancer Awareness Month found that over half of men (52%), and over a quarter of women (29%), claim not to know any of the symptoms of bowel cancer, and when questioned, fewer than a third of people (32%) in Britain were able to name two or more symptoms.

Mark Flannagan, Chief Executive of Beating Bowel Cancer said, “Bowelcancerclaimsalifeevery30minutes,soit’sveryworryingthat4in10people(40%)claimnottoknowanyofthesymptoms.DuringAprilalone,over 3,200 people in the UK will be diagnosed with bowel cancerandmorethan1,350willdiefromthedisease,oftenbecausetheywerediagnosedtoolate.

“This Bowel Cancer Awareness Month we are calling for people totake a few moments to learn the symptoms of bowel cancer, andwhentoactuponthem.Itcouldsaveyourlife.”

Further breakdown of the results showed that people in the South West and East of England had the best knowledge of

the high risk symptoms.

National Clinical Director for Cancer, Professor Mike Richards said, ‘’Weknowthemainreasonourcancersurvival rates lag behind other countries is becausetoomanypeoplearediagnosedlate.

“Thisiswhyourcanceroutcomesstrategyfocusesonearlierdiagnosisandwhywerecentlylaunchedthe‘Be

Clear on Cancer’campaigntoraisesymptomawarenessof bowel cancer. Our message is clear: if for the last three

weeks you have had blood in your poo or it has been looser, youneedtotellyourdoctor.”

During April, Beating Bowel Cancer is introducing a host of new initiatives to raise awareness of bowel cancer symptoms and support those affected by bowel cancer, including the launch of a new website www.beatingbowelcancer.org.

Beating Bowel Cancer has released shocking new data that shows the lack of awareness of symptoms of the UK’s second biggest cancer killer.

The North West People in Research (NWPiR) Forum is a new organisation that aims to support patient and public involvement (PPI) and public engagement (PE) in health research. The Forum, which is jointly sponsored by NHS North West and the Research Design Service NW, recently held a series of launch events. The events, in Liverpool, Preston and Manchester, successfully engaged almost 120 people with workshop sessions highlighting good practice within Universities, Trusts, Research Networks and Biomedical Research Centres in the region.

The launch also included a workshop that asked people to think about the barriers to PPI/E and how the Forum could help to address these. Barriers included fear, language (e.g. jargon), lack of time, funding and training, and difficulty accessing patients and members of the public to involve. People who attended the launch felt that the Forum could help by showcasing good practice in the region and providing things like mentoring and training. They also felt that the Forum could facilitate links between patients, the public and health researchers.

The Forum welcomes interested people living or working in

the North West to join us; local organisations may also join as Corporate Members. If you are interested in becoming a member, or would like more details on the Forum, please contact Marisha Palm on 07554413269 or at marisha.palm@northwest.nhs.uk.

An exciting opportunity to get involved in the work of the Forum

The Forum is currently looking for professionals and interested members of the public from the North West to join a Training Working Group. The Working Group will meet on a monthly or bimonthly basis over twelve months, and the remit of the group will be (1) to review the PPI/E training that is already available, (2) to identify additional training needs for patients/members of the public and researchers and (3) to explore how these needs can be met. Working Group members will be reimbursed for their time and expenses.

If you are interested joining the Working Group, please contact Marisha Palm (details above). The

deadline for applications is Monday 6th June 2011.

Launch of the North West People in Research Forum

Halton LINk, Halton & St. Helens VCA, Sefton House, Public Hall Street, Runcorn WA7 1NGTel: 01928 592405 email: info@haltonlink.org.uk web: www.haltonlink.org.uk

Halton LINk is hosted by Halton & St Helens Voluntary Community ActionRegistered Charity No. 1106001 and a Company Limited by Guarantee No. 2539153.

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