If you would like this report in plain large print or another format

please call Newcastle Council for Voluntary Service (Newcastle CVS)

This report is published on behalf of Newcastle LINk by Newcastle CVS, Higham House,

Higham Place, Newcastle upon Tyne, NE1 8AF.Tel 0191 232 7445

The information is published in good faith but Newcastle LINk and Newcastle CVS accept

no liability for any inaccuracies or omissions in this report.

Newcastle CVS

Address Higham House, Higham Place Newcastle upon Tyne, NE1 8AFPhone 0191 232 7445Fax 0191 230 5640Email ncvs@cvsnewcastle.org.ukWebsite www.cvsnewcastle.org.uk Registered company 6681475 Registered charity 1125877

Involve North East Address 26 Hawthorn Terrace Newcastle upon Tyne, NE4 6RJ Phone 0191 226 3450Fax 0191 273 1623Email beinvolved@involvene.org.ukWebsite www.involvene.org.uk Registered charity 1116182

Newcastle LINk’s

Legacy

1

Contents

Chair’s introduction 2

Newcastle LINk and its volunteers 3 What we did 3 Our structure and governance 4

Our volunteers 6

Enter and view 8 Thefirstvisit 8

The second visit 9

How we worked with the voluntary and community sector 10

How we involved the people of Newcastle 12

Our work with children and young people 14 Information and choice: what do young people think 14

Mind the gap: young people and health 16

Supporting national debate: children’s congenital heart disease 18

Our work on mental health 19

Our work on discharge from hospital and Parkinson’s 21

Hospital discharge: supporting the statutory sector 21

Parkinson’s: working in partnership 22

Our work on using interpreters when accessing health and/or social care services 23

Key contacts and suggestions for Healthwatch Newcastle 24

Key contacts for Healthwatch Newcastle 24

Key suggestions for Healthwatch Newcastle 26

Acknowledgements 27

2

/ Chair’s introduction /

ThisdocumentreflectssomeoftheworkthatNewcastleLINkhasachievedduringthefiveyearsit has been in existence. All of the work has been done by volunteers supported by the LINk host team. I feel that the work shows what voluntary action can achieve.

The document is a record of work undertaken and good practice developed through various parts oftheLINk,throughitsenterandviewvolunteers,taskandfinishgroupsandtheworkoftheExecutiveBoard.TheLINkhasnotbeenabletocarryonallofitsworktoafinalconclusion,butthis will be passed on to HealthWatch Newcastle

Our legacy package is made up of this document and a CD-ROM which catalogues the work of the LINk. The work has been challenging for all parties and we have achieved a great deal by working in partnership with the NHS Trusts, the Primary Care Trust, Newcastle City Council and our neighbouring LINks, as well as the Voluntary and Community Sector.

Ihopethatyouwillfindthispackageusefulandinteresting;mythanksgotoeveryonethathasbeen involved in the work of Newcastle LINk and I wish Healthwatch Newcastle every success in the future.

Ruth Abrahams, Chair of the Newcastle LINk Executive Board

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Local Involvement Networks (LINks) started in April 2008. They gave people a chance to have their say about local health and adult social care services, investigate issues of concern and suggest improvements. All LINks’ had powers to:

• Visit NHS health and adult social care services (using trained Enter and View Visitors). • Askservicecommissionerstorespondtorequestsforinformationwithin 20workingdays. • Askservicecommissionerstorespondtoitsreportsandrecommendations within20workingdays. • RefermatterstoOverviewandScrutinyCommittees.

NewcastleLINkhasbeenfunctioningforfiveyears.Overtheseyears,ourExecutiveBoardmembers, volunteers, and the staff and host organisations supporting it, have come a long way in setting up and developing the LINk. We have:

• Setupthenetwork,itsgovernance,policiesandprocedures. • Recruitedmembersandvolunteers. • Completedissuebasedprojectsandreports. • Supportedcommissionedorganisationstoresearchissuesinpartnership withtheLINk. • Respondedtolocalandnationalconsultations. • Carriedoutinvolvementactivitiesatevents. • …andmore.

In 2012 the Health and Social Care Act 2012 was published which established local Healthwatches. These will replace LINks in each local authority area. On 31 March 2013 we will be saying goodbye and making space for Healthwatch Newcastle: a new local consumer champion for health and social care.

We have worked hard, learned a lot and published a number of reports in the time we have been active. This document aims to show you some examples of our work and the good practice we have picked up along the way. The document is also supplemented with a CD-ROM which contains all of our reports, policies, procedures, role descriptions, videos and other useful templates. We hope that Healthwatch Newcastle will be able to use this information and build on our legacy.

/ What we did // Newcastle LINk and its volunteers /

4

/ Our structure and governance /

Newcastle LINk Executive Board

ThisExecutiveBoardwasmadeupoffiveelectedindividuals,fiveelectedlocalgroupsororganisationsandfiveco-optedlocalgroupsororganisations.TheExecutiveBoardsteeredthe

work, made decisions and approved policies and procedures.

We were hosted by two local organisations, Newcastle Council for Voluntary Service and Involve North East (formerly Community Action on Health), who employed the LINk Support Team. The LINkSupportTeamwasmadeupofaProjectManager,InvolvementOfficer,InformationOfficerandaVolunteerSupportOfficer.Theysupportedandadvisedus,butthekeydecisionsweremade by our Executive Board which met every two months and recently every month! We also had a number of subgroups.

Community issues subgroup Enter and view subgroup Task and finish groups

This subgroup was made up of three Executive Board members. This group was called together between

Executive Board meetings if an issue came in from the

community that needed to be dealt with. This allowed us to deal with community issues quickly. This group did agree newtaskandfinishgroups,

allocate LINk resources and authorise requests for

information.

This subgroup was set up to support the work of Enter and View Visitors. If any research required an enter and view

visit a request would be made with this subgroup and they would decide how to take it

forward.

These subgroups were time-limited groups working on

specificissues.

5

We produced an Annual Report each year, which was sent to the Department of Health. All our research reports were also sent to the Care Quality Commission to inform their work.

Oncesetupourfirstpublishedreportwasonadultsocialcare.Thereportwascalled‘SocialCarein the Home’ and can be found on our CD-ROM.

The previous structure (Patient and Public Involvement Forums) were unable to look at adult social care. When LINks were established they had to ensure a balance between health care andadultsocialcarework.Theremusthavebeenaneedforthisas‘SocialCareintheHome’wasourbiggesttaskandfinishgroupatthetimeandourfirstpublishedpieceofwork.

Newcastle LINk communications

To communicate with our members we:

• Developedastyleguidetoensureallourcommunicationsremainedconsistent. • SetupaFreepostaddressandFreephonenumber. • Setupawebsite. • Producedamonthlye-bulletin. • Producedaquarterlynewsletter. • Producedleafletsandposters. • Produceddocumentsinotherlanguages,largeprint,Brailleandeasyread when requested. • CommunicatedviaTwitter.

We had to agree our own governance, policies and procedures. We also reported our activity on a quarterly basis to our commissioner, Newcastle City Council.

Newcastle LINk policies and procedures

• NewcastleLINkCodeofConduct. • HowNewcastleLINkmakesrelevantdecisions. • Registerofinterestpolicy. • Expensespolicyandprocedures. • Complaints,breachesofdecisionmakingproceduresandresolution of dispute procedures. • Engagementandcommunicationprocesses. • Monitoringpolicy. • Enterandviewpolicyandprocedure.

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/ Our volunteers /

All LINk members and people who got involved in our work were volunteers, but we did have somemorespecificroles:ExecutiveBoardmembers,NewcastleLINkRepresentativesandEnterand View Visitors. All of these voluntary positions had role descriptions and had to abide by the LINk Code of Conduct.

Our Executive Board members were either elected by Newcastle LINk’s membership or co-opted onto the Executive Board. Executive Board members then had the option to represent Newcastle LINk at other meetings, if agreed by the Executive Board. Examples of meetings our volunteers have represented Newcastle LINk at include:

The role of LINk representatives was to listen out for key information at meetings, give updates on our work, write reports and feed it back to the Executive Board.

We also had Enter and View Visitors. These volunteers were advertised for, recruited and trained. Theirrolewastovisithealthandadultsocialcareservices,findoutwhattheydoandmakerecommendations for improvement. There is more about our visitors in the section on enter and view.

Our volunteers came from a broad cross section of communities and provided us with a wealth of knowledge, skills and expertise to help us deliver our work. This was a key strength.

Equality,DiversityandHumanRightsGroup. NorthEastAmbulanceServiceNHSFoundationTrustLINkForum. RegionalLINk’sgroup. ServiceDeliveryScrutinyCommittee. ShadowWellbeingforLifeBoard. WellbeingandHealthScrutinyCommittee.

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Our volunteers knew about people’s needs in a number of areas:

• Blackandminorityethnicgroups • Caringandcarers • Disability • Faithgroups • Homelesspeople • Learningdisability • Mentalhealth • Olderpeople • Visuallyimpairedpeople • Youngpeople

Newcastle LINk’s quick tips

• Setupasubgrouptodealwithurgentissuesfromthecommunity.Thisallowed us to be responsive to community issues. • Makegooduseofco-optedspaces.WeusedthesetoensuretheExecutive Board was representative of as many communities as possible. • Makeuseofthemedtaskandfinishgroups.Theyhaveaclearstartandfinish. • Haveclearroledescriptionsforvolunteers. • Ensurevolunteershavetherightskillsandabilitiesfortheirrolesandsignpost to other more appropriate roles if needed. • Haveclearsupportandsupervisionproceduresforvolunteers. • Beselectiveonwhichmeetingstosendrepresentativestoandwithdrawfrom attending if it does not prove useful. • PlanindevelopmentactivitiesfortheExecutiveBoardandvolunteers.

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/ Enter and view /

/ The first visit /

Enter and view is a tool we can use. It allowed us to send trained volunteers into NHS funded health and adult social care services. Our volunteers were able to see how they are run and make recommendations for service improvements.

Before we could do this we had to develop an enter and view policy and procedure and a recruitment and training programme. We set up an enter and view subgroup to take this forward, supported by a member of the Support Team. The subgroup was made up of six people and met eight times between June 2009 and February 2010. By May 2010 the policy, procedure and recruitment and training programme was formally accepted.

We started the recruitment process in February 2010 as most of the preparation work was complete. The role was advertised and interested volunteers had to complete an application form. Volunteers were then called in for an informal chat with two Executive Board members. If successful,theywereacceptedontoatrainingcourseconsistingoffivemodules.

Training took place in March 2010. At the same time the volunteers were asked to get an enhanced Criminal Records Bureau Check as the role could have put them in contact with children or adults who are vulnerable. Nine Enter and View Visitors were recruited and trained in total.

Training modules

• UnderstandingtheroleofanEnterandViewVisitor. • Visitplanningandreportwriting. • EqualityandDiversity. • Safeguardingvulnerableadults(levelone). • SafeguardingChildren(foundation).

OurfirstvisitwasafamiliarisationvisittothenewAccidentandEmergencyserviceduetoopenattheRoyalVictoriaInfirmaryHospitalinmid-November2010.Thevisittookplacebeforethenewdepartment opened and its aim was to give us an insight into the new department. We did not do the visit to criticise the new service, but to be supportive in its development before and during the firstfewmonthsofitopening.

Thefirstvisitpresenteduswithsometeethingproblems,leadingtoareviewoftheenterandviewprogramme.Welearnedanumberoflessons,someofwhicharedetailedinthe‘NewcastleLINk’s quick tips’ box overleaf.

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/ The second visit /

We did not give up and organised a practice visit in December 2011 with a local pharmacy. Three visitorsvisitedthepharmacytofindoutmoreabouttheirservicesandtheexperiencesoftheircustomers.Thevisitorsusedquestionnairestohelpthemdothis.Thefirstquestionnairehelpedthemfindoutabouttheservicesofferedandtheopeninghoursofthepharmacy,thesecondquestionnairehelpedtheminterviewthepharmacistabouttheirserviceandthefinalquestionnairehelped them to speak to the customers and gather their views of the services offered.

This visit was a success. We found that:

• Thechemistwascommittedtostafftraininganddevelopment. • Allstaffwerecustomerfocussed,helpfulandknowledgeable. • Theserviceswerewellpromoted. • Itwaseasytofindoutinformationaboutthem. • Serviceuserswereveryhappywiththeservicestheyreceive.

We did not conduct any more visits after these two. We agreed from the outset that formal visits could only be conducted based on need. We always offered the option of conducting enter and viewvisitstoourtaskandfinishgroupsandcommissionedorganisations,buttheformalworkwedid never required visits.

Newcastle LINk’s quick tips

• Linkvisitstoyourcurrentresearch. • Setuptaskandfinishgroupstopreparepoliciesandprocedures. • OnlyrecruitEnterandViewVisitorswhenyouhaveasetofactivitiesforthemto to engage with straight away. Setting up a programme of practice activities may be useful. • MakeuseofyourlocalvolunteercentreandVolunteeringEnglandforhelp with involving volunteers. • Makeuseofwww.do-it.org.uk • Usethetrainingaspartofyourrecruitmentprocess.Volunteersorstaffmay findthattheroleisnottherightoneforthevolunteerduringtraining. • Ensurevolunteershaveaclearunderstandingoftheirroleandthepurposeof any visits they are involved in. The best way to do this is to ensure that all visitors are at the planning meeting. • Ensurevisitorstakeresponsibilityforanysupportneedstheyhaveandprovide them with appropriate reasonable adjustments during a visit.

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/ How we worked with the voluntary and community sector (VCS) /

One of our key relationships was with the VCS in Newcastle. We worked closely with VCS organisations in Newcastle to both improve service provision and to ensure continuity of good standards of care.

VCS organisations have had places on our Executive Board and have brought their skills and experience to our strategic decision making. Some of our volunteers and representatives have also been from VCS organisations and have played an important role in representing the LINk and feeding information back to us.

We’ve found that service users and the VCS organisations that support them have been an important source of intelligence. On occasion these organisations have highlighted trends and priorities for us to consider. Sometimes this has led to us commissioning and/or working in partnership with them to research and produce formal LINk reports on important issues.

VCS organisations, their members and users have also contributed to our responses to local and national consultations and had stalls at our drop-in events.

#We have directly engaged with an additional 934 people throughpartnershipworking.Thisfigurewouldbemuchlarger as the LINk has engaged indirectly with organisations through its newsletter, e-bulletin and social media contacts.

• AdvocacyCentreNorth • AfricanCommunityAdviceNorthEast • Alzheimer’sSociety • AnchorStayingPut • AngelouCentre • CarersCentreNewcastle • EastEndCommunityDevelopment Alliance • EldersCouncil • FawdonCommunityAssociation • HealthandRaceEqualityForum • HealthWORKSNewcastle • IndependentLivingZone • Launchpad • NewcastleCommunityDentalService • NewcastleCouncilofFaiths • NewcastleDisabilityForum • NewcastleFutures

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Organisations we have worked with

• AdvocacyCentreNorth • AfricanCommunityAdviceNorthEast • Alzheimer’sSociety • AnchorStayingPut • AngelouCentre • CarersCentreNewcastle • EastEndCommunityDevelopment Alliance • EldersCouncil • FawdonCommunityAssociation • HealthandRaceEqualityForum • HealthWORKSNewcastle • IndependentLivingZone • Launchpad • NewcastleCommunityDentalService • NewcastleCouncilofFaiths • NewcastleDisabilityForum • NewcastleFutures

• NewcastleSocietyforBlindPeople• NorthumbriaUniversity• Parkinson’sUK• QualityofLifePartnership• RiversideCommunityHealthProject• Search• SocialWorkCo-operative• Solutions• Streetwise• TheCyrenians• ThemWifies• TrinityChurchGosforth• TyneandWearCareAllianceProject• WestEndYouthEnquiryService, Children North East• YourHomesNewcastle– YouthIndependenceForum

Newcastle LINk’s quick tips

• Takethetimetogettoknowkeylocalvoluntaryandcommunitysector organisations and what they’re doing. Set up ways of keeping well connected with them. • UsesomeofyourbudgettocommissionlocalVCSorganisationstodo research and consultation work. They can help you engage with under- represented groups and their service users.

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/ How we involved the people of Newcastle /

We involved people in a number of ways. We had drop-ins every year, gathered people’s views at various community venues to help inform our research and used questionnaires and surveys where needed. We also had a website and sent out regular newsletters and e-bulletins to tell people about our work. If people needed to talk to us about any concerns, they could use our Freephone telephone number. Staff were able to signpost people to the services they needed or log their concerns and monitor the situation.

One area of good practice we’d like to pass on is Newcastle LINk’s open forums. LINk open forums gave people a direct say on their local health and social care services. These friendly forumswereopentoallandheldincentral,fullyaccessiblevenues.Supportwasprovided–forexample,largeprintmaterials,aninterpreter,transportation–sothateveryone could take part.

We brought together residents and voluntary and community groups with the people who commissionandprovidelocalservices.Usingthelatestparticipatorymethods,weinformedpeopleandgatheredviewsinanenjoyableandmeaningfulway.Thefindingswerethenwrittenupinto LINk reports and sent to the relevant commissioners and providers.

#390 people took part in our open forums.

Not everyone had time to attend the forums so we also provided paper and online surveys, and went out and about to gather views. To ensure all communities had a voice we also held sessions in convenient locations for under-represented groups. These included BME communities, disabled people living in sheltered accommodation and job seekers.

Usingthistwoprongedapproach–organisedmeetingsandtargetedinvolvement–helpedustoinclude the views of all communities. Our open forums supported people to be better informed and talk to the people who plan and run their services to help make them better.

Open forums were advertised widely through a variety of media including e-bulletins, newsletters, websites and Twitter.

‘I appreciate the opportunity for my opinion and experiences to be included in the process.’

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Newcastle LINk’s quick tips

• Gooutandspeaktounder-representedgroupsabouttheissuesyouare consulting on. Offer incentives if you can. • Focusconsultationeventsandactivitiesonlocalconsultationsasmuch as you can.

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/ Our work with children and young people /

We also wanted to ensure that the views of children and young people using health services were heard. This section illustrates some examples of our children and young people themed work.

Afterthepublicationofthewhitepaper‘EquityandExcellence:LiberatingtheNHS’,wecommissioned research into young people’s expectations of exercising choice and control over their own healthcare.

Rather than commission adult researchers to carry out this work, we asked ten young people from StreetwiseandtheWestEndYouthEnquiryService(aprojectbasedatChildrenNorthEast)tocarry out peer research. With support from youth workers and the LINk Support Team, the young people carried out a city-centre street survey followed by focus groups at youth projects across the city. This ensured a comprehensive spread of ages, ethnicities, life stages and interest groups.

/ Information and choice: what do young people think? /

The commissioned organisations were:

• Streetwise • WestEndYouthEnquiryService(WEYES),ChildrenNorthEast

#10 young people volunteered as peer researchers for this work.

In all, the researchers spoke to 170 young people aged 13 to 25. They found that young people are concerned about a wide range of health issues with cancer, body image and sexual health among their top priorities.

The researchers found that most young people prefer to explore their health concerns face to face withadultstheyhavedevelopedatrustingrelationshipwith,oftenincludingGeneralPractitioners(GPs)andyouthworkers.Theyalsovaluedleafletsgivingclearandeasilyunderstoodhealthinformation as well as informative internet sites.

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Asaresultoftheirfindings,theresearchersmadetenrecommendations,buildingonexistinggoodpractice where possible, to encourage young people’s active participation in their own health.

TherecommendationsincludedencouragingGPstotaketimetolistenandtalktoyoungpatients;bettertrainingforhealthprofessionalsinworkingeffectivelywithyoungpeople;collaborationsbetween health professionals and youth services to increase the number of appropriate options availabletoyoungpeople;andproactiveworkbyGPsurgeriestowelcomeandrespondtofeedback by young patients.

Sincepublishingthereport,‘GP@WEYES’sessionshavebeenorganisedinpartnershipwithWEYESandNHSNewcastleWestClinicalCommissioningGroup.TheyoungpeopleareabletoaccesssupportfromaqualifiedGPthroughappointmentsandgroupsessions. On the part of the young people involved in the research, they acknowledged their own responsibility to take an active interest in their own health, and to seek support when they need it –toensurebetterhealthandwellbeing.

Most of the young people taking part in the study wanted to be more involved in health decisions thataffectedthem,althoughmanyhadexperiencedsignificantbarrierstoinvolvementinthepast.Frustration at being treated differently from adults was a common concern.

/ Information and choice: what do young people think? /

‘Young people are concerned about a wide range of health issues with cancer, body image and

sexual health among their top priorities.’

‘Most young people prefer to explore their health concerns face to face with adults they have developed a trusting relationship with, often

including General Practitioners (GPs) and youth workers.’

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We commissioned research into changing people’s behaviour around diet, exercise, smoking, drugs or alcohol in Newcastle. The organisations commissioned were the Social Work Co-operativeandFawdonCommunityAssociation.ThefindingsindicatedthatyoungwhiteBritishpeople from mainly deprived communities tend to take a casual approach to healthy lifestyles. They tend to exceed the weekly alcohol limit (47% of young men and 39% of young women) and view alcohol as something they need to relax. In particular, they regard drinking and smoking as a ‘riteofpassage’.Theyfelttheywereyoungandfitenoughtodealwithanyunhealthylifestylesandthat they could make the changes when they grew older.

Our members felt that the issues uncovered in this work needed further investigation. In particular, they wanted to discover whether young people from minority ethnic backgrounds had similar views to the young white British people initially interviewed.

Local groups were commissioned to gather views. The Health and Race Equality Forum spoke to young people from African, Bangladeshi, mixed race and Pakistani backgrounds. Riverside Community Health Project interviewed young people from communities more recently settled in NewcastleincludingCzech,CzechRomaandSlovakRoma.

Smoking emerged as a key issue with young Eastern Europeans, who were relatively unaware of health awareness campaigns and who said smoking was not seen as a bad habit within their families.

Ourfinalreport‘Youngpeople’sperceptionsofhealthandlifestylechoices’wassenttoanumberoflocalstatutoryorganisationsandthefindingsinformedNewcastleuponTyneHospitalsNHSFoundationTrust’sEqualityandDeliverySystem2012–2016.

/ Mind the gap: young people and health /

#92 young people aged 16 to 25 were consulted.

‘We support the work of local organisations. We saw the potential for further work and supported

local organisations to take it forward.’

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/ Mind the gap: young people and health /

The commissioned organisations were:

• FawdonCommunityAssociation • HealthandRaceEqualityForum • RiversideCommunityHealthProject • SocialWorkCo-operative • Solutions

Other outcomes

• TworecommendationsfromthereportwereincorporatedintotheJointStrategic NeedsAssessment(inparticular,thesubstancemisuseJSNA). • Thereportalsoencouragedlocalstatutoryorganisationstoundertakebespoke researchintowhyyoungpeopledon’tcontinuetoexerciseandwhatwouldencourage themtobecomemoreactive.

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‘We take part in national consultations.’

/ Supporting national debate: children’s congenital heart disease /

TheDepartmentofHealthlaunchedits‘SafeandSustainable’reviewofcongenitalheartservicesfor children in England in March 2012. Newcastle’s Freeman Hospital was one of the 11 Specialist Surgery Centres being considered for closure as part of a plan to reduce the number to six or seven.

We held an open forum so people would learn about the four proposed options. There was also an opportunity to hear from NHS commissioners and from a parent whose child had been treated at the Freeman’s heart unit.

Our publicity about the proposals, together with the open forum, generated a number of responses from LINk members and the wider public. These were all fed into an Ipsos Mori response form that was submitted to the Department of Health on our behalf. We strongly supported keeping Freeman Hospital’s heart unit.

As a result of these and other national responses, the Department announced in July 2012 that the Freeman would be one of the seven heart units to be retained in the restructure.

That decision is currently under review, and the reconsidered decision is due in Spring 2013.

Newcastle LINk’s quick tips

Scrutinise your work to see which community views’ are missing. Fill the gap by working with organisations who specialise in working with the community you want to target.

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/ Our work on mental health /

Wehavepublishedthreereportsondifferentaspectsofmentalhealth.Tworeports,‘Stigmaofmentalhealth’and‘People’sexperiencesofmentalhealthservices’,werecommissionedbytheLINk.Athirdreport,‘Mentalhealth:accessandinterfacesbetweenprimaryandsecondarycareinNewcastle’, was initiated by voluntary and community sector organisations in Newcastle.

Focus groups and face-to-face interviews were used to elicit views and opinions on these subjects.Forthe‘Accessandinterfaces’report,aneventwasalsoheldwithserviceproviderstosupportdiscussionsaroundtheidentifiedproblem.

Together, the reports found that stigma and discrimination is quite a problem, with many service users experiencing it. Local and national campaigns on stigma have worked well and more of these are welcomed.

In terms of mental health services themselves, there were lots of positive comments about crisis and home resolution services, acute day services and non-ward based urgent care. Negative comments were generally made about inpatient services.

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There was recognition that voluntary and community sector services were essential and statutory services were encouraged to address the gap between primary and secondary care.

The reports have ensured that these issues have remained on the agenda of service providers. Practical actions have been limited due to re-organisations within provider organisations but it is hoped service remodelling will solve the problems.

The‘Accessandinterfaces’reportcanbesaidtohaveframedthedebateandappearstohavebeenadoptedbythoseGPsintheClinicalCommissioningGroupstakinganinterestinmentalhealth. Northumberland Tyne and Wear NHS Foundation Trust is taking steps to deal with the issuesasitremodelsservicesbutthecurrentfinancialconstraintsmeanthatfillingsomegapsmay create gaps elsewhere. There is a possibility that an overhaul will take place in the future. Healthwatch Newcastle may want to keep a keen eye on the progression of this.

‘These reports informed Newcastle upon Tyne Hospitals NHS Foundation Trust’s Equality and

Delivery System 2012 – 2016.’

‘We also engaged with Northumberland Tyne and Wear NHS Foundation Trust’s consultations.’

The commissioned organisations were:

Stigma of mental health Launchpad People’s experiences of mental health services Launchpad

Mental health: access and interfaces between primary and secondary care in Newcastle Launchpad CarersCentre AdvocacyCentreNorth

Newcastle LINk’s quick tips

Start a constructive dialogue with statutory organisations about any community issues as soon as possible.

/ Our work on mental health /

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/ Our work on discharge from hospital and Parkinson’s // Hospital discharge: supporting the statutory sector /

A National Inpatient Survey highlighted a potential issue with the information that Newcastle upon Tyne Hospitals NHS Foundation Trust provides to family and carers when a patient is discharged from one of its hospitals.

AsanactivememberofthePatient,CarerandPublicInvolvementGroup,wecarriedoutresearchontheNHSTrust’sbehalf.Usingaquestionnaireweaskedwhatinformationcarersandrelativesofdischargedpatientsreceivedandhowusefultheyfoundittobe.Wespecificallytargetedorganisations and groups whose service users were more likely to have had a hospital admission or who supported people from minority communities. Promotion also took place in the wider community.Mostpeopleweresatisfiedwiththequalityofinformationbutalmostonequarterfeltthat there was not enough information.

OurfindingshelpedtheNHSTrusttoreviewandupdateits‘LeavingHospital–Whattoexpectbooklet’.A‘NurseSpecialist-Discharge’isalsobeingrecruitedtosupportcomplexindividualdischarge and to look at how all disciplines work together to ensure effective discharge planning. The NHS Trust continues to review feedback and monitor patient discharge to ensure ongoing improvement in the experience of patients.

Newcastle LINk’s quick tips

Send representatives to key meetings. They may see gaps that your organisationcanfill.

#74 people gave their views, almost one third were disabled and over half were carers.Participants were most likely to live in the outer west of Newcastle (27%).

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/ Parkinson’s: working in partnership /

ArepresentativefromParkinson’sUKNorthEastteamraisedconcernsataLINkExecutiveBoardmeeting about how medication is managed for hospital inpatients with Parkinson’s.

SomeinpatientsfounditdifficulttogetthemedicationprescribedtotreattheirParkinson’satthecorrect times. Timing of medication is vital. If patients do not take their medication on time, their symptoms become uncontrolled and they become very ill. Managers at the Newcastle upon Tyne Hospitals NHS Foundation Trust read about the concerns from the minutes of an Executive Board meeting and decided it was an area they needed to act upon.

ByworkinginpartnershipwiththeNHSTrustandParkinson’sUKweraisedtheprofileofhospitalinpatients getting their Parkinson’s medication on time. The NHS Trust put into place a programme of action for staff including an awareness raising campaign, training on the nature and treatment of Parkinson’s and encouraging Parkinson’s specialist nurses to work closely with ward managers.

Pharmacists, nursing staff, doctors and medical students now receive training on the importance of patients getting Parkinson’s drugs on time.

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‘Working with voluntary and community sector organisations helped us expand our reach. We were able to access established and emerging

black and minority ethnic communities.’

/ Our work on using interpreters when accessing health and/or social care services /

#63 people were consulted who spoke a number of different languages including Punjabi,Dari,Yoruba,Farsi,French,Cantonese,Lingala,Tigrinya,Urdu,Hindi,Arabic,Mirpuri,Bengal,Czech,Slovak,Dari,Pashto,Polish.

Two organisations were engaged by Newcastle LINk to research the problems that people whose firstlanguageisnotEnglishwereexperiencingwhenaccessinghealthandsocialcareservices.

The Health and Race Equality Forum (HAREF) and Riverside Community Health Project worked together with people from both established and emerging black and minority ethnic communities. RiversideCommunityHealthProjectworkedwithpeoplewhospeakCzech,Slovak,Dari,Pashto,andPolish.HAREFworkedwithpeoplewhospeakPunjabi,Dari,Yoruba,Farsi,French,Cantonese,Lingala,Tigrinya,Urdu,Hindi,Arabic,MirpuriandBengali..

The two reports were presented with joint recommendations which included suggestions about quality standards for recruitment and development of interpreters, training for NHS staff, interpreter support in pharmacies and information sharing with black and minority ethnic communities about new developments.

ThereportscontributedtothebusinessplansofnewGPClinicalCommissioningGroups(CCGs)in Newcastle. This issue was also the subject of a workshop at a conference organised by the CCGs.HAREFisensuringthatprogressismadeontheactionsagreedduringthisworkshopbymeetingwiththeCCGs.HAREFalsostatesthatthisprocesshasstrengthenedsupportandendorsementoftheCCG’scommissioningguide.Thisguideinformedthetenderspecificationforthe recent procurement of NHS North of Tyne Interpreter Support. The successful provider will have to recruit, manage and professionally develop staff to the quality level outlined in the guide.

The commissioned organisations were:

• HealthandRaceEqualityForum • RiversideCommunityHealthProject

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/ Key contacts and suggestions for Healthwatch Newcastle /

/ Key contacts and suggestions for Healthwatch Newcastle /

Healthwatch Newcastle will need to make contact with the regional Healthwatches when they are established and with the organisations in the table below.

Healthwatch England

Care Quality Commission

Healthwatch EnglandCitygateGallowgateNewcastle upon TyneNE1 4PAenquiries@healthwatch.co.uk

Care Quality Commission National Correspondence Citygate GallowgateNewcastle upon TyneNE1 4PAinvolvement.edhr@cqc.org.uk

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Local Authority

Clinical Commissioning Groups

Newcastle upon Tyne Hospitals NHS Foundation Trust

North East Ambulance Service NHS Foundation Trust

Northumberland, Tyne and Wear NHS Foundation Trust

Adult and Culture Services DirectorateNewcastle City CouncilCivic CentreNewcastle upon TyneNE1 8PATel: 0191 232 8520

Wellbeing and Health Scrutiny CommitteeMemberServices’UnitRoom 150Civic CentreNewcastle upon TyneNE99 2BN

NHS Newcastle West Clinical Commissioning GroupBevan House1EshPlazaSir Bobby Robson WayGreatParkNewcastle upon TyneNE13 9BA

Newcastle Upon Tyne Hospitals NHS Foundation TrustFreeman HospitalFreeman RoadHigh HeatonNewcastle upon TyneNE7 7DNTel: 0191 233 6161

North East Ambulance Service NHS Foundation TrustBerniciaHouse,GoldcrestWayNewburn RiversideNewcastle upon TyneNE158NYTel: 0191 430 2000

Northumberland, Tyne and Wear NHS Foundation TrustSt Nicholas HospitalGosforthNewcastle upon TyneNE3 3XTTel: 0191 213 0151

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/ Key suggestions for Healthwatch Newcastle /

We encourage Healthwatch Newcastle to take on board all of the quick tips and good practice illustratedinthisdocument.However,wehaveafewmorefinalrecommendationsforHealthwatchNewcastle.

We recommend that Healthwatch Newcastle:

• Usesourpoliciesandprocedureswherepossible.Theytaketimetodevelopsoit wouldmakesenseforHealthwatchNewcastletostartwithandbuildonthem. • Reviewsourenterandviewpackage(recruitment,selectionandtraining)and buildsonthat. • Continuesourworkonwalk-incentres.InApril2013thenewNHS111numberwill beimplemented.Itwouldbegoodtoreviewpatient’sexperiencesofthatandthe useofNHSwalk-incentresinApril2014. ContinuesourworkonChooseandBook.TheDepartmentofHealthintendsto makechangestoChooseandBookanditsplansaredetailedin‘Liberatingthe NHS:furtherconsultationonproposalstosecureshareddecisionmaking’.Itwould beusefultoreviewthisinApril2014.Youshouldbearinmindourreportandthe recommendationswemadewhenplanningthiswork. • ConsidersthereviewoftheLiverpoolCarePathwaywhichisduetobecompleted inSummer2013andactuponthereviewwherenecessary. • ConsidersassigningBoardLeadsforkeyareas.TheLocalGovernment Associationrecommendsappointingdignitychampionsandleadsforqualityand safeguarding. • Recruits,trainsandsendsrepresentativestoappropriateexternalmeetings. • Revisitsallourpastworktoseeifanythingneedstoberesearchedorfollowedup. Inthesetimesofausteritywe’drecommendthatHealthwatchNewcastlelooksinto: • Adultsocialcare • Childrenandyoungpeopleservices • Carers’breaks • MaintainsaconnectionwithorganisationscommissionedbyNewcastleLINk. • AgreesaprotocolforworkingwiththeCareQualityCommission.We’drecommend youmakeuseoftheguidestheCareQualityCommissiondevelopedforLINksand thefutureguidesitwillbedevelopingforLocalHealthwatch. • MakesuseoftheLocalGovernmentAssociationHealthwatchguides,inparticular: • EstablishingLocalHealthwatch:dignity,qualityandsafeguardingadults. • EstablishingLocalHealthwatch:workingwithhealthandwellbeingboards. • EstablishingLocalHealthwatch:engagingwithchildrenandyoungpeople. • InvolvingLocalHealthwatch:TheroleofchairsandmembersofHealthand WellbeingBoards.

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/ Acknowledgements /

Over the years a number of people and organisations have helped Newcastle LINk deliver its work. Thank you for your support.

Individuals

Albert DunctonAlison BlackburnAngela WallsAnita Davies Barbara DouglasCarolineYoungClaire HortonCraig DuerdenDan DuhrinDeanna van der VeldeDeborah HallDipu AhadFiona SwindellGemmaLockyerHeather NivenJacqui Jobson Jen MarriottJohn BentleyJohn EvansJohn McConnellJohn ReidJulie MarshallKatherine SpoorsKatie Dodd KezraShakirKieran ConatyLeah LambLee PeacockLin O’HaraMary BellshawMary NichollsMaureen DonaldNeil BairdNicci DonnellyNick ForbesPam JobbinsPam Richold

Organisations

Advocacy Centre NorthAfrican Community Advice North East (ACANE)Alzheimer’sSocietyAnchor Staying PutAngelou CentreCare Quality CommissionCarers Centre NewcastleEast End Community Development AllianceElders CouncilFawdon Community AssociationHealth and Race Equality ForumHealthWORKS NewcastleIndependentLivingZoneInvolve North EastLaunchpadNewcastle City CouncilNewcastle Community Dental ServiceNewcastle Council for Voluntary ServiceNewcastle Council of FaithsNewcastle Disability Forum Newcastle FuturesNewcastle Society for Blind PeopleNorthumbriaUniversityParkinson’sUKQuality of Life PartnershipRiverside Community Health projectSearchSocial Work Co-operativeSolutionsStreetwiseThe CyreniansThemWifiesTrinityChurchGosforthTyne and Wear Care Alliance Project Volunteer Centre NewcastleWestEndYouthEnquiryServiceYourHomesNewcastle–YouthIndependenceForum

Patricia HunterRachel HeadRachel ParsonsRichard MarxRobert BewickRoss CowanRuth AbrahamsSallyYoungSandy LambrouShamshad IqbalSue BolamTasbiha MukhtarTrevor MoonViolet Rook