listening to homeless people - health link

Listening toHomeless People

involving homeless people inevaluating health services

“The stigma sticks to you – nomatter how long it is. ‘He’s only adosser’ - how many times have

we heard that?”

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Listening to Homeless People

Sarah Gorton, consultant; Elizabeth Manero, Health Link; Clare Cochrane, Groundswell UK

Listening to Homeless People:Involving Homeless People inEvaluating Health Services

Contents

Executive Summary

What is Healthlink? What is Groundswell UK?

Introduction

1 The Workshop and the Participants

2 Experiences of the health servicea) GPsb) Specialist services for homeless peoplec) Mental health servicesd) Accident and Emergency and Ambulance Servicese) Drug and Alcohol servicesf) Admission and discharge from hospitalg) Access to information

3 Timebanksa) How they workb) Time Banks and monitoringc) Monitoring visits - involvement of homeless people

4 Recommendations

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Homeless people in London can experiencea far lower standard of treatment andservice from the NHS than members of thegeneral public can expect.

« Homeless people experiencediscrimination by GPs and GPpractices, which impacts on thehealthcare they receive – research hasfound that homeless people are 40times more likely not to be registeredwith a GP than members of thegeneral public (note i) and 81% of GPsfeel it is more difficult for ahomelessperson to register with them than theaverage person (note ii).

« Homeless people experience a lack ofcontinuity of treatment and standardsof care.

« Drug and alcohol services arefragmentary and hard to access – yetfour out of five homeless peopleinterviewed for one piece of researchwere addicted to either drink or drugs(note iii).

« Homeless people are often unable toaccess information about their rightsregarding health services andcomplaintsprocedures.

« More thought needs to be given tocompensating homeless people fortheir input in monitoring andevaluation – as their time andexperience is crucial to investigatingthese issues.

Health Link and Groundswell recommendthat:

« Homeless people should be involvedin monitoring health services – asthis report demonstrates.

« Homeless people should be directlyinvolved in training NHS staff, fromreceptionists and nurses to GPs andspecialists.

« Homeless people must be able to findout more easily about their right toregister with a GP and Primary CareTrusts should monitor refusals by GPpractices to register homelesspatients.

« New models of providing primaryhealth care to homeless people shouldbe more widely available, primaryhealth care should be available inhostels or clearly signposted forhostel residents.

« Homeless people must be able to findout more easily about their rights tomake complaints, and should besupported to complain; the newComplaints Routing Project whichgives patients more information abouthow to make complaints must bemonitored and evaluated to checkthat it is useful to, and used by,homeless people.

« An electronic medical records systemfor homeless people, that they canuse, should be considered.

« A pan-London system to assess drugand alcohol treatments and access tothose treatments should beintroduced, and waiting times fordetoxification treatments should bemonitored.

executive summaryand recommendations

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What is Health Link?

Health Link builds on the work of LondonHealth Link in helping communities becomeactive agents in improving their own health,by linking them firstly to the bodies whichcontrol the determinants of their health andsecondly to the NHS which controls thequality of their health services. Health Linkhas been set up to provide a sound platformfor developing new approaches to patientand public involvement, communitydevelopment and training in the light of anumber of new opportunities:

« There are new functions for the NHS andlocal government on patient and publicinvolvement and community involvement.These give an unprecedented opportunityfor statutory authorities to start dialoguewith the local community to address healthservices and determinants of health.

« Dialogue requires two sides toparticipate. Health Link aims to givecommunities the skills to identify their ownhealth issues and make their own case inthat dialogue.

« The determinants of health overlap withquality and accessibility of health services.To influence health, communities needinfluence on both.

« One of the barriers to participating insuch a dialogue and exercising influence is‘lack of confidence among residentsbecause of low levels of literacy andeducation, unemployment and lack ofexperience of community involvement,committee work and management. (WhatWorks?: Reviewing the Evidence Base forNeighbourhood Renewal NRU 2002). Thereis therefore a link between healthdisadvantage and participatorydisadvantage.

Healthlink aims to offer communitiesinformation about the NHS and what affectstheir health, and to influencedecisonmakers so that health services andhealth are improved.

What is Groundswell UK?

Groundswell UK is a charity that supports anational network of people and projectscommitted to inclusive approaches totackling homelessness, poverty andexclusion.

We believe that homeless, poor andexcluded people...« are not ‘the problem’ – they must be partof the solution« hold the key to solutions in theirexperiences and knowledge« have a right to the information they needto make informed choices about their lives« can build communities and createpositive change by acting together.

Together we aim to...« work with people who have experiencedhomelessness, poverty or exclusion to setup and run projects to help themselves andothers achieve their goals.« encourage service providers to recogniseand use the skills and expertise of peoplewho access their services.« create opportunities for people toinfluence the decisions which affect theirlives.

Groundswell provides a wide range ofservices and activities designed to supportgroups and individuals who share ourbeliefs. We do this through:

Information & communications: Weproduce a newsletter, information sheetsand practical guides, and maintain awebsite and database.

Training & networking events: includingnational events like the Self Help Forum,capacity building training for homelesspeoples projects, and participation trainingthat enables service providers to involveservice users.

Network support: including grantsprogrammes, project support, practicaladvice and information sharing throughexchange visits.

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‘Listening to Homeless People’ is the reportof a workshop held by London Health Linkand Groundswell UK in October 2003, inwhich homeless and formerly homelesspeople were invited to give their views andshare their experiences of health services.

It’s clear from the encounters that homelesspeople have had with various healthservices, that there is both a lack ofconsistency in the way that individualpractitioners deal with homeless people anda lack of coherence and continuity in theprovision of health services, whichparticularly affects homeless people whomove around. A number of individualpractitioners are sincere and respectful intheir treatment of homeless patients, but

Health Link’s predecessor organisation,London Health Link worked as a pan-Londonwatchdog on the NHS. Responding tostrong concerns about access to healthservices for homeless people outlined in theCrisis report ‘Critical Condition (note i),London Health Link began exploring waysto enable homeless peoples voices to beheard in health services. As a first step theycontacted Groundswell UK, an organisationexperienced in facilitating opportunities forhomeless people to speak out, to arrange aseminar to test out some of the possibilitieswith a group of homeless people. HealthLink, the co-producers of this report,succeeded London Health Link — which hadto be wound up when its funding base ofCommunity Health Councils was replaced.

The workshop was held to consult withhomeless people on their experience ofhealth services and on the viability ofinvolving them in monitoring healthservices. A further theme for consultationwas the idea of brokering with Time Banks,so that monitoring health services wouldbecome an activity for which people couldearn credits. London Health Link wanted to

explore the response of homeless people tothat possibility, and to look at whetherTime Banks could be useful for homelesspeople.

A number of studies have found that peoplewho are homeless have poorer health andpoorer access to health care than thegeneral population, including ‘CriticalCondition’ (Crisis 2002), ‘Inhabiting theMargins’ (National Homeless Alliance, 2001)and ‘Beyond Help’ (National HomelessAlliance 1997). At the same time, the NHSis undergoing profound changes. One ofthose changes is a duty on all healthservices to consult with patients and torespond to what they hear. Patients Forumsare part of the new structure; they will bemade up of volunteers who will monitorprovision in the health service and speak upfor patients. Monitoring the health serviceis basically about talking to people who useit about their experiences and how it isworking for them. It is an official function,so when a report is done of a monitoringvisit there is a duty on the health service torespond to the issues that have beenraised.

1. the workshop

introductionthe lack of consistency in healthcareservices mean that itinerant people do notalways receive appropriate or well-maintained care. Homeless people reportbeing treated rudely by doctors, nurses andreception staff, and have felt that this hasultimately prevented the successfultreatment of their health problems.

As a result of hearing the views expressedby participants during the workshop, and onthe basis of homeless peoples experiencesof using health services, Health Link andGroundswell UK have framed a number ofrecommendations based on a widerrecognition of homeless people’s rights ascitizens.

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The NHS has not been good at listening topatients but there is now the recognitionfrom the government that they have got tostart getting things right for the people thatuse the services and that the start of thishas to be dialogue with users. Health Linkaims to ensure that people who arehomeless can have input into this dialogueand influence services.

Groundswell planned the workshop,recruited individual participants, and hostedthe session at their premises. Groundswell’sDirector Toby Blume provided support tothe participants and the facilitators.

London Health Link was represented at themeeting by Elizabeth Manero and DelythNeal. Sarah Gorton was employed by LondonHealth Link to help to facilitate the meeting.

Participants

There were seven participants recruited byGroundswell, from their volunteer base; fivemen and two women.

All the participants had experience ofhomelessness, some with a homelesshistory of over twenty years, and among thegroup there was experience of a number ofdifferent forms of homelessness: roughsleeping, squatting, sofa-surfing, hosteldwelling, Travelling. There was alsoexperience of the range of complex needsprevalent in the homeless population: ahistory of alcohol and drug dependence,mental health problems, being in and out ofinstitutions, the army and psychiatrichospital. There was also one couple amongthe participants. One of the issues they feltvery strongly about was the lack of hostelaccommodation for couples. People areoften forced to remain on the streets inorder to be with their partner.

Some of the participants had been involvedin peer research and had experience ofinterviewing other homeless people. All hadbeen involved in community self help, andtherefore were more self confident andbetter informed about their rights thanmany homeless people are.

Names of the participants have beenchanged to protect their anonymity.

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At the start of the workshop Sarahexplained there were two main reasons forinviting participants to share theirexperiences of using the health services:« so that London Health Link could feedback homeless people’s experience throughstructures it is involved with, and« to enable London Health Link to engagethe group in thinking about the healthservice; what needs changing or what workswell from the perspective of homelesspeople.

The workshop discussed a range ofdifferent health service provision. However,there were a number of themes that arosein the discussion that applied acrossservices.« Experience of negativestereotyping anddiscrimination.« Need for training for allhealth staff, includingreceptionists, to enhancetheir understanding ofhomelessness.« Need for more GP timeand more holistic thinking todeal with multiple problemsexperienced by people whoare homeless.« A lack of continuity of care– this can be caused by the mobility ofhomeless people, with even specialisthomeless health services not crossingborough boundaries.« Need for advocates and an accessiblecomplaints system.« Problems with access to methadonetreatment, and alcohol and drugsdetoxification.

a) General Pactitioners

DiscriminationThere was a general feeling that homelesspeople experienced discrimination fromgeneral practice when trying to register as anew patient.

« James described being accepted as a newpatient until he gave the hostel address –only to then be refused.

« Avril felt that an assumption was madebased on her appearance that she was adrug user who wanted a methadone scriptWhen the doctor realised that she wasn’t,and that she wanted to be prescribed thecontraceptive pill the attitude changed andbecame much more welcoming.

A general feeling was expressed thathomeless people are lumped together andstereotyped and that health professionalspicked up an ‘aura of homelessness’. Evenafter individuals were housed they felt thelabel and the negative stereotyping stuck to

them: “the stigma sticks to you –no matter how long it is. ‘He’sonly a dosser.’ This is what youhear - how many times have weheard that?”

The feeling was expressed thateven when a doctor wassympathetic and making aneffort there was an underlyingtension around about theirhomelessness that made theconsultation difficult.

« Avril had the experience of living on abus, with a group of Travellers working asfruit pickers. One of the children in thegroup became ill and the local GP refusedto see her because she wasn’t registered.She was eventually taken to the GP by alocal woman, who was registered. It wasthen realised that the child was seriously illand that the illness she had was a publichealth risk. Suddenly the healthprofessionals were all very interested andthe group got a lot of attention.

RegistrationSome participants identified the problem asbeing with GP receptionists: “If you can getpast the dragon on the door you are halfway there.”

2. participants’ experiences of healthservices

“the stigmasticks to you –no matter howlong it is. ‘He’sonly a dosser.’How many timeshave we heardthat?”

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Tom pointed out that a lack of an address isoften used by receptionists as a reason notto register, but in fact if someone is of nofixed abode there is no reason why thesurgery address cannot be used as theformal address for registration purposes.

Understanding of homelessnessProblems with GPs were not confined toaccess but also lay in their lack ofunderstanding of the long term impact ofhomelessness on health. It was felt thatdoctors needed training to increase theirunderstanding of homelessness and health.This should include physical issues such asback problems, arthritis, respiratoryproblems, feet problems as well as issuesaround drugs, mental health and alcohol.

« Paul, who had been analcoholic for many years, feltthat it was very difficult to finda GP who understood alcoholissues or could properly supporthim in detoxing and that theyhad been frightened to takehim on even after he was dry incase he should relapse.

A medical modelThere was also a general feeling that thetime people were given in consultation witha GP was so brief that there was no chancefor them to understand the complexity ofthe issues or to look at someone’s overallcare needs. The presenting problem is dealtwith in isolation from the context ofsomeone’s life.

« James had been prescribed Seroxat aftera four minute consultation and had spentmuch time dealing with the negativeconsequences. He is now a member of theSeroxat users’ group and is well aware ofhow strongly certain drugs are marketed atGPs and that they do not look at thealternatives.

« Betty had suffered the knock out effectsof a prescribed drug when her symptomscould be controlled by a drug with lesserside effects, but which is more expensive.Because her partner had some knowledge of

medication he advocated for her and gother drugs changed. Without that help shefelt she would have had many more years ofthe debilitating effects of her former drugregime.

Mobility and lack of continuityPeople had been satisfied with some of theGPs they had managed to register with, butthe problem then was if they were mobile,each time they moved they were required tore-register. People had also found as aresult of this mobility that one GP wouldrefer you for some treatment, the nextwould disagree and change the referral orstop the treatment. This was very difficultespecially when they had found a GP theyliked and trusted.

« Paul, who is now housedand permanently registered, saidthat for the first time ever he felthis respiratory problems werebeing adequately addressed andhe was being seen by an asthmanurse and given inhalers andproperly monitored.

ComplaintsOne suggestion in relation to GPs was thatthere should be an easily understandablecomplaints system, similar to the yellowcard system for drugs, a system thatallowed people to easily lodge a complaintabout their GP.

b) Specialist Services for HomelessPeople

AppreciationWhere there were specialist health servicesfor people who are homeless they weregenerally appreciated and participants hadfelt more comfortable using them than theyhad mainstream general practitioners.Some of the workshop participantscontinued to use specialist services forsome years after they were housed becausethey felt they were known and understoodby specialist practitioners.

“If you can getpast thedragon on thedoor you’rehalf waythere.”

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Lack of standardisationThere is no uniformity of provision ofspecialist services, one hostel may have avisiting GP or a specialist health andhomelessness team and another may haveno health input. It was felt that due to thelevel of complex needs of people in hostelsit should be part of the service to have avisiting GP and mental health specialists.

Lack of continuity across boundariesWhere people had accessed the services ofa specialist health homeless team they werehelpful. However, even a specialist team didnot cross borough boundaries, so if youmoved hostels or were given a flat you wereout of their catchment area.

Records and continuityThere were three participants in the groupwho said that their medical records hadbeen permanently lost due to their constantmoving around. This clearly has adetrimental impact on their continuity ofcare. As Paul put it: “Then they only haveyour word – and who’s going to take theword of a homeless drunk?”

One solution that Joe suggested to this wasthat everyone should have a swipe card,and that all medical records should be heldelectronically. Every time an individual sawa different health professional they couldhave easy access to their medical history.

Leroy, who had been consulting otherhomeless people on health issues, fed backthat many homeless people liked the ideaof having easily accessible health records.There were some participants in favour ofthis idea and others felt information can beused against you and that this would bevery expensive and not their priority interms of public spending.

Whatever the solution, there was a strongfeeling in the group that the mobility ofhomeless people and the way that healthservices were organised into GP catchmentareas, and borough boundaries for mentalhealth services, worked against access togood quality care.

c) Mental health services

« James, a user of mental health services,said that despite feeling he had preferentialtreatment over other homeless people, dueto being articulate, polite and middle class,in the absence of a pan London system, hedespaired about getting a decent service: “Ihave been assessed four times by fourdifferent teams, three times I was referredto a psychologist but before myappointment came up I was moved on.Why?” This not only meant James sufferedthe absence of a good service but also feltbelittled and patronised, a parcel that waspassed between the boroughs that no onewanted to pick up.

There is evidence that mental healthproblems are often the underlying causes ofsubstance misuse, self-harm andhomelessness (see Shelter’s factsheet“Mental Health and Homelessness”) and yetthe mental health service seems unable tocope with the needs of homeless people.

d) Accident and Emergency andAmbulance services

A number of the participants hadexperienced having to use Accident andEmergency services for primary carepurposes, such as getting a prescription orgetting a dressing changed, because theydid not have access to a GP. They hadexperienced waits of up to eight hours for avery simple request. Some felt that as soonas they were categorised as of no fixedabode they were segregated in A&E andgiven less priority.

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« Paul challenged the fact that a well-to-docouple were seen in front of him when hehad been there before them. He had beenan alcoholic but had not had a drink forthree years. When he was seen by thedoctor he was told: “It’s alright to complain,but don’t do it when you’ve got drink onyou.” He was aware that the doctor waslooking at his records and that the stigmaof having been a drinker was stuck to him,years later, and that the doctor still felt itwas acceptable to talk to him in that way.

A&E is a very difficult environment foralcoholics; they need a drink and physicallycannot cope with the wait without a drink,so it is a service that doesnot work for them.

Another barrier that wasdiscussed is the issue ofpeople with pets. A lot ofhomeless people havedogs and cannot go toA&E because there isnowhere to leave yourdog whilst waiting.

The feelings of prejudiceand labelling were echoedby other people withregard to the ambulance service.

« Avril had two experiences of having tocall an ambulance out to a squat, and theambulance men were rude and had anappalling attitude. They immediatelyassumed that the emergency was drugsrelated. When they realised theirassumption was mistaken they apologised,further implying that if it had been a drugsissue their attitude would have beenjustified.

Participants also had experience of beingtreated with real respect and courtesy byA&E staff. Tom described what an enormousdifference attitude made: “I have beentreated with the utmost respect andcourtesy – you can just be lucky, it dependswhat shift you hit. When you are, it feelsgreat, like you’re royalty.”

They also felt that sometimes the staff were

also frustrated with the limitations of thesystem and wanted to be able to provide abetter service than they had the resourcesto provide.

e) Drug and Alcohol services

Access to methadoneParticipants were asked about theirexperiences with drug and alcohol services.

« Avril had been with a GP whom she likedand who was helping her with a methadonereduction programme. She moved toHammersmith for a fresh start, to get awayfrom the drugs scene she was involved with.

She didn’t want to go to the DrugDependency Unit there as shewanted to keep away from thedrugs scene. This worked until herGP retired, but the new GP to whomhis patients were transferred wouldnot take her because she was out ofarea. When Avril tried to get aservice locally she wasn’t prioritisedby the DDU and could not get aservice: “Because I wasn’t injectingand I wasn’t stealing and I wasn’t atrisk because I was halfway throughmy methadone reduction, theydidn’t want to know. It is easier to

buy drugs on the street than methadone, soI was back to square one.”

The experience with drug clinics was thatthey were not set up in a way that meets theneeds of users. There are too few clinicsdispensing methadone so you have to travela distance, and then there are moreobstacles to overcome. They prioritisepeople who turn up at certain times andthen have certain dispensing times for 45minutes in the morning, if you are homelessand a drug user you are unlikely to be ableto fit into this type of inflexible system:“When you’re homeless and a user you justdon’t have that kind of togetherness.”

Access to Detox« Paul had substantial experience of tryingto get detoxes for a long-term alcoholproblem. His experience was that when hefelt motivated to detox he needed to beable to access the service immediately. If

“I have beentreated with theutmost respectand courtesy –you can just belucky, but when ithappens it feelsgreat, like you’reroyalty.”

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there is a service you can access on the daythat you feel motivated to stop then thatwould work for people. He had been toldthere was a six week wait for a residentialdetox: “That feels really hard when youhave decided to stop to be told your onlyoption is to carry on drinking for six weeks.If they had got me on day one of mydecision, I would have gone in.”

Because of the amount he was drinking itwas dangerous to home detox and he wouldhave needed a lot of support and drugs todeal with the hallucinations and shaking.This wasn’t available through his GP.

This experience was echoed by those withexperience of wanting a drugs detox, that itis really hard to get the motivation and thewillpower to want to stop and you need theservices to be responsive to that. Thegeneral experience was trying to detoxwhen you are homeless is too hard and thatyou need to go into residentialaccommodation, but you need to be able tocatch people at the moment they are ready.

f) Admission and discharge from hospital

Lack of planned dischargeIn general people felt that the healthservice thinks in boxes and fails tounderstand people’s needs holistically.Physical health and mental health are dealtwith separately and if you are in hospital forone issue the other is ignored. Littlethought or care goes into thecircumstances into which someone isdischarged.

« Avril had a friend who was in hospitalhaving managed to come off drugs and wassimply sent in a taxi to the HomelessPersons Unit.

« Betty had a major operation and wasdischarged back to the streets after sixdays. She had two further admissions withcomplications. Her partner only felt that hewas listened to by the hospital after hethreatened to go to the national press.

People felt that they had to rely onnetworks of friends to get any aftercare asit was simply not provided by the hospital.

g) Access to information

Health Promotion information is nearly all ina written form. Learning disabilities, lowliteracy levels and English as an additionallanguage are all big issues within thehomeless population. There needs to bemore thought put into how to get healthmessages across in forms that do not relyon written English.

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3. timebanksa) How they work

Delyth explained the ideas behindconsulting people about Time Banks.« Being part of a Time Bank would be oneway of rewarding people for their time ifthey became involved in monitoring thehealth service.« The NHS is unable to pay people for theirtime except officially through the payroll.Because many homeless people are inreceipt of benefit, official income would bededucted from their benefit.« Time Banks can be good at helping builda sense of community and are fully inclusive– all members of a time bank are equal, sothat people who have been homeless arenot further stigmatised and excluded.

The basic principles are that:« Everyone’s time is of equal value, onehours work earns one time credit.« Everyone is a giver and a receiver.« People are rewarded for helping eachother.« They provide an opportunity to shareskills.

Delyth displayed a list of the type of skillsand services that Time Banks offer. Theseincluded:« Help with filling in forms« Helping someone to learn English« Painting and decorating« Writing or reading a letter for someone« Escorting someone to an appointment« Lifting and shifting« Gardening« Someone to talk to« Yoga workshops« Refurbished computers« Cooking« Dog walking

Several Time Banks have been approachedby London Health Link and are interested inthe idea of working with homeless peopleand monitoring local NHS services as a taskfor which people earn credits.

b) Time Banks and Monitoring

Some participants at the meeting werealready familiar with Time Banks and theway in which they work. The group had ageneral discussion about whether they wereinterested in Time Banks and couldenvisage using them. There was somedifficulty in people imagining that the ideacould be used by people when they arehomeless. The only examples that reallyrelated to people’s lives when they werehomeless were form-filling and learningEnglish as an additional language. It wasfelt that language teaching in particularcould help to break down the artificialbarriers that divide and rule betweenasylum seekers and the white homelesspopulation.

It was felt that a number of the services onoffer were things that should be available inhostels or from resettlement workers aspart of the services they are funded toprovide. It would simply let service providersoff the hook if people were paying for theseservices through a Time Bank.

Other issues raised by the group were thatthe whole idea was not based on payingpeople a decent wage for doing a job, andthat people suspected there would be a lotof hoops to jump through such as requiringreferences or ID in order to become a TimeBank volunteer. Despite these reservationspeople were not entirely opposed to theidea and did come up with lots moresuggestions of how a Time Bank could beused, with the proviso that it would bemainly useful at a point at which peoplewere settling into permanentaccommodation. These additional ideasincluded:« Cat or dog sitting« Cinema tickets« Day trips« Going to the off licence for someone« Reflexology« Haircuts« Free swimming sessions« Access to a gym« Cleaning

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« Buddying« Auricular acupuncture« Sewing« Face to face interviews« Money

involving homeless peoplein monitoring visits

Elizabeth explained more about how healthservice monitoring visits work. Publicmeetings do not work for everyone.Alternative ways are needed to getfeedback from users and insights into howlocal NHS services are performing.

Monitoring visits are an official route tomake the NHS listen to what patients haveto say. The NHS have a track record of notalways listening to patients, so any methodthat can be used to get them to listen topatients is worth using.

Patients’ Forums, through monitoring visits,will look at all NHS services, includinghospital wards, mental health units,Accident and Emergency departments.Things they will be looking at include, howclean they are, whether the water dispenserworked, whether there are things to occupychildren, what state the toilets are in.Monitoring visitors would talk to the staffand find out what it was like to work there.Most importantly they will sit and talk tothe patients who were waiting, or who hadbeen admitted, and find out about theirexperiences, as users of the service.

People who have experienced homelessnessare much more likely to be aware of thesort of questions Forums need to ask tomonitor a service from the point of view ofhomeless people. They are more likely toput homeless people at ease and encouragean open dialogue, if they ask them aspatients about their experience.

Visits are done in groups of two or three,and NHS services are notified before a visitis made. The group doing a monitoring visitwould get together beforehand to discusswhat prompts they are going to use inconversation with staff and patients. They

would then participate in the visit and talkto people, assuring them that theirconversations are confidential. Sometimesone person does the talking and anothertakes the notes, as it is hard to do both atthe same time. After the visit a report iswritten and sent to the hospital trust orother relevant authority. The Trust then hasa duty to respond to each issue that hasbeen raised.

Following this clarification of the way thatvisits function, the group discussed theirresponse to the idea of being involved inmonitoring visits as people with experienceof homelessness. There was interest fromall participants about the idea of beinginvolved in monitoring visits, but there weremore reservations about the idea of TimeBanks as the system of reward.

People felt the idea smacked of wanting touse people’s skills and experience fornothing and trying to avoid paying people.It is patronising and it is using cheaplabour. “Homeless people are wanted as partof the monitoring system because of theirexperience – why shouldn’t that experiencebe rewarded in the way that otherexperience is – with money?”

Some of the group have been involved indiscussing experience of the NHS with otherhomeless people and they were rewardedwith £5 for each interview carried out, aswas the interviewee. It was felt that theissue of benefit should be seen as theresponsibility of the claimant and was notsomething those employing them neededto concern themselves with. Someparticipants had taken part in marketresearch where they were simply handedmoney in an envelope, no questions asked.

Elizabeth’s explained that the NHS couldnot do that as there is an audit trail on allpublic NHS money, which would prohibitpaying people off the record, and therewould be concern about opening them upfor accusations of fraud. It was felt that thearea needs more exploring and discussionbefore conclusions are reached about themost useful and appropriate way forward.

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available and accessible at GPs’ surgeries,day centres and other information pointsused by homeless people.

Primary Care Trusts should monitor thenumbers of refusals by GP practices toregister patients of no fixed abode. This willenable PCTs to performance manage thosewho breach the laws, and assess the unmetneeds of homeless people.

Routes to influenceSince 1 April 2004 there has been a newsource of information, through Primary CareTrusts, about who is refused acceptance asa patient by a GP practice and why. It hasbeen the law since 1992 (note iv) that adoctor may accept someone onto their listof patients who “is moving from place toplace and is not for the time being residentin any place”, provided the person intendsto stay between 24 hours and three months.Compliance with this law has never beenmonitored. The law is to be strengthenedfrom 1 April (note v), although the GPpractice is still left with a great deal ofdiscretion. Under the new law:« A GP practice may accept a patient as atemporary resident if they fit the abovedescription, for whatever period up to threemonths as the GP practice thinks fit.« At the end of that period, the practicemust give the PCT details of the patientaccepted as temporary.« If a temporary GP wants to end anarrangement with a patient before theperiod promised, he or she must inform thepatient, and will remain responsible for theperson for a further seven days after thatdecision.« A GP may not refuse to register a patientwithout “reasonable grounds”.« They should not refuse on the basis ofthe patient’s “race, gender, social class,religion, sexual orientation, appearance,disability or medical condition”. This wouldmean that they could not refuse on thegrounds that the person had a drugproblem.

4. recommendations and routes toinfluence

a) Stigma and TrainingHomeless people should be directlyinvolved in training NHS staff to break downthe stigma and stereotyping that homelesspeople face in their use of health services.

Routes to influenceThe NHS University has been set up toimprove skills across the NHS and hasrecently set up a Patient and CommunitiesUnit to involve patients in the way this isdone. Health Link is a patientrepresentative on one of the NHSU’sgroups. This Report should be sent to theNHSU with this recommendationhighlighted.

Homeless Link’s Health Inclusion Projecthas been set up to engage strategically withhomelessness service providers and healthbodies to identify and promote innovationand good practice in meeting the healthneeds of homeless people. The project’soutcomes will include a training pack forhealth practitioners and their support staff,and structures to promote the involvementof homeless people in the development andrunning of health support services forhomeless people. Groundswell is advisingthe Health Inclusion Project and will forwarda copy of this report to Homeless Link.

Health practitioners should receive trainingin attitudes to homeless people withmodules developed and delivered byhomeless people. The experience of variousprojects in the Groundswell network,including the Simon Community in Glasgow,has shown that this type of training isvaluable to both the professionals andservice users, as well as enhancing thequality of the services offered.

b) Refusal to accept a homeless patientonto a GP listMany homeless people do not know thatthey have the right to be accepted onto aGP list. Information about the right to beaccepted as a patient should be easily

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« If a GP does refuse to register a patient,they must notify the patient in writingwithin 14 days of the refusal and record thereason.« The GP must also keep a written recordof all refusals and reasons.« The PCT can ask for a copy of thisrecord.« Under the Freedom of Information Act(coming into force in January 2005)members of the public should be able toobtain a copy of this record.

Similar provisions on discrimination andrecords apply to removing a patient from aGPs list, although the GP has greaterdiscretion because they can simply say therelationship with the patient has irrevocablybroken down.

This Report should be sent to NationalPrimary Care and Care Trust DevelopmentTeam, which manage the development ofPCTs, and the General Medical Councilwhich manages professional standards forGPs, with this recommendation highlighted.

c) Lack of holistic careSuccessful new models of providing primarycare for homeless people should be mademore widely available. Personal MedicalServices (PMS) pilots are funded by centralgovernment to test new ways of providingprimary care other than the standard GPsurgery. For example:

« in Tower Hamlets, the Homeless MedicalCentre provides GP-type services solely forhomeless people in Tower Hamlets. Fiftyfive percent of its patients are of no fixedabode. It also tries to provide a holisticservice by referring patients on to otherservices they may need. The Centre has asalaried GP, nurse practitioner, twoRegistered Mental Health Nurses and adrugs worker. It works closely with hostels,housing benefit and legal advisors and drugand alcohol services.

However, such services should not ghettoisehealthcare for homeless people and therebyreinforce their stigma. Homeless peoplewho choose to access standard GeneralPractice should be able to do so.

Routes to influencePMS pilots on various aspects of primarycare are managed by the Department ofHealth with eight regional facilitators. ThisReport should be sent to National PrimaryCare and Care Trust Development Team,which manage the development of PCTs,with this recommendation highlighted.

d) Need for an accessible complaintsprocedureHomeless people have a right to makecomplaints about their treatment, but manydo not know how to go about it. There alsoneeds to be recognition of the difficultiesthat many marginalised people have inexercising their rights.

A new complaints process is beingintroduced across the NHS. As previously,any user of the NHS has the right tocomplain if they are dissatisfied. The mainchanges aim to bring greater transparencyat local level in dealing with complaints,and greater impartiality if things have to betaken further.

« GPs will have to publicise theircomplaints process to patients and others,record the numbers and the subject matterof complaints and pass on the informationto their PCT. Previously some of theserequirements only related to hospitals.« For the first time, GPs will not be able toavoid making a written record of acomplaint by saying it has been resolved, aserious loophole in the current system. Itwill be up to the complainant to saywhether or not it has been resolved.« If a complainant remains dissatisfiedwith the response they have received fromthe NHS organisation complained against,they now have the right to an independentreview. This is currently carried out byanother NHS organisation. Once thereformed system starts in a few months,such a review will be carried out by theindependent inspectorate, the HealthcareCommission, at arms length from the NHS,improving impartiality.« If a complainant remains unhappy withthe Independent Review they can complainto the Health Service Ombudsman, which isalso independent of government.

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e) Electronic Records for PatientsThe needs of homeless people for access toelectronic information should beconsidered, so they are not disadvantagedby the move to electronic records andelectronic booking for patients.

Routes to influenceHealth Link is involved in representingpatients in the London project to set up ‘E-Booking’ of surgery and outpatients for GPs.Health Link will ensure that the issuesraised in this Report are taken into accountin that process. A National Electronic CareRecord for patients, which the NHS andpatients themselves will be able to access,is also being developed nationally. The NHSInformation Authority, which is running this,has recently made a commitment to be“proactive involving patients and the publicin its work”. This report should be sent toNHS Information Authority with thisrecommendation highlighted.

f) Continuity of careA pan-London template for assessment ofdrug and alcohol treatment needs should beintroduced, which can be accepted betweenboroughs without the need for a newprocess to be started if someone movesfrom place to place.

Routes to influenceThe Mayor of London has formed theGreater London Alcohol and Drug Allianceto improve the pan-London response todrug and alcohol problems. The nationalSupporting People Strategy requires localauthorities to work with the NHS to improveservices to vulnerable people and makesexplicit reference to cross authorityservices. This report should be sent toGLADA, the Mayor of London and to theLondon Supporting People Forum, with thisrecommendation highlighted.

g) Improved access to detoxificationtreatmentWaiting times for drug and alcoholdetoxification treatment must be reduced.Times should be independently monitoredand publicised to create an incentive forimprovement. Drug users should beinvolved in service improvement and drugs

It is recognised that finding out how tocomplain about the NHS in the first placecan be a problem. The Complaints RoutingProject is producing new information forpatients on how and where to makecomplaints about different parts of the NHSand is being developed by the HealthcareCommission, a new inspectorate whichstarted on 1 April 2004. Once they havefound out how to complain an IndependentComplaints Advocacy Service (ICAS) set upwith government funding under contractwith various different providers across thecountry, is intended to support individualcomplainants through the process.

Another way to enable homeless people touse complaints procedures is to supporthomeless people’s advocacy projects.Groundswell is working with homelesspeople and a homelessness service providerto develop a pilot project which will producea working model for homeless people’speer advocacy and self-advocacy.

Routes to influenceThe new complaints process andaccompanying information and supportoffer three opportunities to influence theaccessibility of the complaints process forhomeless people:« A better complaints process – Whilethe information and support requirementsfor the new system are being considered,this report should be sent to the relevantDepartment of Health Policy teamconcerned, so that the needs of homelesspeople can be taken into account.« Support for individual complainants –This report should be sent to those in theDepartment of Health who are performancemanaging the ICAS contracts to ensure thatthe needs of homeless people are takeninto account.« A single place to go for information –Health Link is involved in devising this newsystem as the representative of thePatients’ Forum on the Steering Group.Health Link will ensure that the issuesraised in this report are taken into accountin that process. Homeless people’sinformation needs should also be explicitlyconsidered in all these processes.

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and alcohol waiting times should be givenequal priority.

Routes to influenceFor drugs detoxification services, theNational Treatment Agency has introduceda two week waiting time target for inpatientdetoxification for 2004 and is managingprogress towards it. Local waiting times aremonitored by self-reporting every threemonths from Drug Action Teams to theAgency, although there is no way ofchecking this data against users’experiences. The Agency is using some ofthe methods to change processes whichhave been successful in reducing waitingtimes in the mainstream NHS. All local DATSshould be involving users in their work.This Report should be sent to the NTA withthis recommendation highlighted.

The Alcohol Harm Reduction Strategypublished by the Prime Minister’s StrategyUnit in 2004 recommends that PCTs publishannually “a statement outlining therequirements for those requiring help”. Thisstrategy also proposes an audit of demandfor and provision of alcohol treatmentservices, that the Healthcare Commissionmonitor services and that “integrated carepathways” be developed for vulnerablepeople with alcohol problems, such asrough sleepers. This report should be sentto Hazel Blears, Minister of State for CrimeReduction, Policing, Community Safety andCounter-Terrorism, who is responsible forimplementing the Alcohol Strategy, with thisrecommendation highlighted, and so thathomeless people are involved in all theseprocesses.

h) Availability of healthcare in hostelsPrimary health care should be available inhostels, or signposted from hostels so thatit is easily accessible to homeless people.This should be based on a templatedeveloped with users and the NHS to ensureconsistency, equity and access.

Routes to influenceHostels are mostly Registered SocialLandlords, subject to regulation by theHousing Corporation, which has introducedtenant input into the inspection of RSLs anda Regulatory code which requires that:“Vulnerable and marginalised residents areprovided with appropriate responsivehousing services. Support and carearrangements (including liaison with otheragencies) are in place, where appropriate.”This report should be sent to the Chairmanof the Housing Corporation so that theissues of health care in hostels and userinvolvement can be considered in theregulatory framework. A copy should alsobe sent to Lord Rooker, Minister of Statewith responsibility for Supporting People.

i) User involvement in monitoring healthservicesHomeless people should be directlyinvolved in the monitoring of healthservices. This will ensure that there isequity of influence under the new legal dutyon the NHS to consult and involve patientsand in the work of Patients’ Forums.

Routes to influencePatients’ Forums have a legal duty tomonitor health services and seek the viewsof patients. Health Link and Groundswellwill facilitate the involvement of homelesspeople in monitoring visits by Patients’Forums, to give excluded people the sameopportunity to influence health services asPatients’ Forums enjoy. The HomelessnessDirectorate of the ODPM is conducting pilotprojects in five local government areasincluding London to develope userinvolvement in monitoring hostel standards,including health care availability. Thisreport should be sent to the HomelessnessDirectorate so that this recommendationcan be fed into the outcome of these pilots,and influence the resulting standards anduser involvement methods.

Health Link and Groundswell UK,March 2004

notesi Critical Condition – Homeless people and access to health services, Crisis 2002ii Home and Dry? Homelessness and Substance Use, Crisis 1999, R Dean and T Craigiii Hidden Homelessness and Healthcare, Cooper and Wilson 2002iv Statutory Instrument 1992 (635) The NHS (General Medical Services) Regulationsv The NHS (General Medical Services Contracts) Regulations 2004

Health Link356 Holloway Road, London N7 6PA

tel: 020 7700 8135email: [email protected]

Groundswell UKElmfield House, 5 Stockwell Mews, London SW9 9GX

tel: 020 7737 5500email: [email protected]

listening to homeless people - health link

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