What it Means to Make a DifferenceA booklet for Carers and families of

people with a Dual Diagnosis in Bolton

Edited by Ann Gorry & Tracy Collard June 2011

CONTENTS

Introduction 1

1 So you're a Carer 2

2 The Setting 3

3 What is ‘Dual Diagnosis’? 4

4 Getting Support 6

5 Crisis? What Crisis? 8

6 Dealing with a Crisis 10

7 Entitlements 12

8 Carers’ Assessments 13

9 Service User Confidentiality 15

10 Questions for a Psychiatrist or Care Team 18

11 Carer Consultation/Involvement 20

12 Useful Research 22

13 The Way Forward 24

Additional Information 25

Resources 30

“Caring for a loved one with dual diagnosis is very stressful for thecarer and the person you love can be badly affected by your stress.It is important to look after yourself – this is in no way selfish oruncaring, but rather it can help rekindle the flames of love andrespect for each other rather than smothering them”

Bolton Carer

Introduction

Carers are increasingly being recognised for their expertise andknowledge, and their role as essential partners in the treatment and recovery process.

Carers of people with dual diagnosis often say that services simply don’tunderstand the problems they face. “Service users say they want people tolisten and to understand what it’s like for them when they are in distress – andit’s the same for carers. Caring rarely stops when the person being cared forenters services. Carers can be integral to a service user’s support system, andtheir input can substantially improve that person’s chances of recovery.”1

This resource ‘What it Means to Make a Difference’ was first produced as partof the National Dual Diagnosis Programme in 2007 to help identify the needs of carers and to get carers and families of people with a dual diagnosis moredirectly involved and to provide information and support for them. Theprogramme came to an end in 2010 however the messages are still the same.

Thanks to funding from the Bolton Carer Demonstrator Site Project, this publicationhas been re produced as a Bolton edition, to help support carers of people witha dual diagnosis living in Bolton and is part of a raft of service developmentswhich will improve service users and their carers journey in and out of mentalhealth and drug and alcohol treatment services and work towards recovery.

Thanks also to Suzanne, Anne and Pat who contributed to the development ofthis booklet, and special thanks to Christine for allowing us to include one ofher poems.

Please note the CD Rom which accompanies this booklet is the copy made forthe original national resource, and thanks again to all the carers and familiesinvolved in filming the documentary, and of course to Tom Dodd my colleagueand friend for interviewing all the passionate men and women who gave theirtime and shared their stories to make this documentary possible.

Ann Gorry

Bolton Dual Diagnosis Development Lead

1

1 Triangle of Care – A Guide to Best Practice in Acute Mental Health Care – 2010

Looking after someone with adual diagnosis can be isolatingand stressful. Due to thecomplexities of this condition thecarers own mental and physicalhealth could be affected by thedemands from this role2.

You will need…

Support; information and a two-way dialogue with services sothat you can help the personyou care for stay as well aspossible and access theappropriate services in order tobegin their recovery. Thisbooklet is designed to help youwith this communication.

It’s not unusual to struggle withthe relationship you have withthe person you care for. Youmay have to learn to find abalance between protectingand over-protecting them,which isn’t always easy.

Even when local servicesprovide support for yourrelative, as a carer you mayfind you are not getting all the help you need. Howeverservices are there to help you too.

This booklet is designed to help you get the best from them by providing you with local information and giving you some helpful hints andprompts to assist you whendealing with people working in provider services.

It will also provide localinformation about organisationsand groups available in Boltonwhich may provide you withhelp, advice and support, alistening ear, and sometimes a shoulder to cry on when you need it.

2

1 So, you’re a Carer...

2 Caring for Carers; Dept of Health, 1998

3

Mental health and concurrentmental health and substance/alcohol use (dual diagnosis) isnot something experienced byone person in isolation, althoughit often feels like that for carers.This condition can have apowerful effect on a person’srelationship’s – especially withfamilies and friends.

Services have not alwaysrecognised the impact on all thepeople involved who often mayhave to make enormous sacrificesto care for someone displayingbehaviours and attitudes that evenprofessionals may find difficultto accept and fully understand.

Mental health problems anddifficulties arising, especially asevere psychosis, can befrightening for those experiencingit – but carers not only have todeal with some of the mostacute disturbances their lovedone is suffering, they may alsofeel isolated, confused andunsupported and not knowwhere to turn for help.

Service users may be the onesthat are carrying the burden oftheir illness, however, theirproblems impact on a numberof people, especially familymembers, and can turn astable home life upside down.

When people become mentallyunwell, many features of theirlives can be affected..... Work,relationships, family and all theother elements which make upa person’s life. When drugsand/or alcohol is included inthe mix, the whole problem forcarers takes on dimensionsthat few people (except thosewho have experienced it) caneven begin to imagine.

2 The Setting

Dual diagnosis is not a diagnosisin itself but is a term used todescribe people who have botha mental illness and problemsarising from drug and/or alcohol use. The condition issurprisingly common.

Studies have shown that:

• Over 1/3 of people with a severemental illness admitted intohospital will also have concurrentalcohol and/or drug problems

• Over half of people insubstance misuse serviceswith higher rates in alcoholtreatment teams also havemental health problems

• 70% of prisoners report havingsubstance misuse and somemental health difficulties

• High rates of dual diagnosiswithin specialist mental healthteams such as AssertiveOutreach and EarlyIntervention Teams

There are a number of challengesassociated with dual diagnosisthat can make the situation forcarers very difficult.

ONEThe definition of whatconstitutes “dual diagnosis”varies from practitioner topractitioner and betweenservices. (In fact, practitioners often talk about ‘complex needs’).

TWOThere’s a huge diversity in theway the two conditions affecteach other and there aredifferent ideas about the bestway to treat them.

THREEThere can be a number ofagencies involved in a person’scare including mental healthservices, specialist drug andalcohol services, primary careand other organisations in thestatutory and voluntary sector.As a result, care risks beingfragmented and individuals andtheir carers may find it difficultto navigate across a number ofagencies and services.

44

3 What is“Dual Diagnosis”?

FOURHistorically, substance misuseand mental health serviceshave evolved separately. Fewservices are currently set upwhich deal with clients’substance misuse and mentalhealth problems at the sametime. Service users havetended either to be treatedwithin one service alone, whichhas meant that some aspectsof their cluster of problemshave not been dealt with aswell as they might, or havebeen shuttled betweenservices, with a correspondingloss of continuity of care.

While a proportion of serviceusers needs have not been metbecause of these barriers,carers needs have often beenneglected also.

In Bolton there have been anumber of developments overthe last few months and wenow have a structure in placeto begin to build on many ofthe recommendations from therecent Dual Diagnosis Reportwhich has outlined a number ofareas for improvement, inparticular around bridging thegap between mental healthand drug and alcohol services.This work is underway but willtake time before the structuresand appropriate training andawareness raising programmesare fully implemented. It is onlythen that we will be able to seereal service improvement forusers and carers. But it willcome; we just need to keepmoving forward a step at a timeand work together.

5

Carers report that some of thebest help and understandingcomes from other carers andlocal carers’ support groups.Few carers’ groups actually set themselves up to supportdual diagnosis in isolation. InBolton there are a number ofgroups which are activelyinvolved in trying to improveservices for carers of peoplewith a dual diagnosis and aremembers of the localoperational steering group.

The Harbour Project is avoluntary organisation whichprovides support to parents,families and carers affected by someone else's drug oralcohol misuse.

The Project offers support,practical advice, and drugsawareness information, regulargroup meetings where you canshare experiences with others,one to one support, and aconfidential 7 day telephonehelpline tel: 01204 62274 formore information.

Making Space recognises thatcarers lives are deeply affectedtoo. That’s why we created theMaking Space Carer supportservice so that people like you– people who are committed tothe care and wellbeing of theirloved ones also get support,someone to talk to and apowerful voice to representyou. Also have the backup andopportunities to enjoy a muchimproved quality of life. Forfurther support and informationplease contact your localMaking Space Support Workeron: 01204 390390 ext. 3497

More information on localservices for carers can be foundon www.gmw.nhs.uk underservice users and carers page

Take this booklet with you if

you are meeting professionals

or other carers and grab all

the contacts and addresses

you can. Use this page to

note down any numbers of

useful local contacts or

agencies even if you don’t

call them at this stage.

6

4 Getting Support

7

STATUTORY SERVICES

General Practitioner or Family Doctor:

Community Psychiatric Nurse (CPN):

Care Co-ordinator

Hospital

Alcohol or Drug Service

Police

Other

VOLUNTARY AND

OTHER SERVICES

Other Carers

Carers Groups

Key Worker

Carers can be the first to beaware of a developing crisis –often at times whenprofessional help has not yet been established. Carerscan often be best placed tonotice subtle changes in theperson for whom they care, and are usually the first tonotice the early warning signsof a relapse.

Section 6 gives some usefuladvice about what a carer cando in a crisis at home. Itaddresses the sorts ofcircumstances which mostcarers would recognise as themoment when a situation hasbecome, or is in danger ofbecoming, out of control.

However... New carers learnvery quickly that their version of“a crisis” is often very differentto the one held by the careteam responsible for theservice user. It’s important thatthis doesn’t lead to any frictionbetween the carer and the careteam; different agencies havedifferent priorities in the waythey approach mentalhealth/substance misuse andthe staff are expected tocomply with the policies andprocedures established bythose agencies.

Work is progressing in Bolton to connect all thedifferent services involved to develop a collaborativejoined-up approach to care.For some carers it doesn’talways feel that services areworking together.

8

5 Crisis? What Crisis?

For professionals, (and despitean individual worker’s personalresponse) a crisis will tend tobe defined in terms laid downin advance by the agency theywork for and will contain astrong consideration of riskand public safety together withthe level of human resourcesthey have available.

For many carers, a crisis canbe defined as a time when theycan’t personally cope with asituation any longer andeverything is at risk of gettingout of their control.

Carers’ crises often come when they can’t cope any moreand need desperately to talk, to cry, even to scream withfrustration; they often need to be taken out of the situation orhave someone else manage the problems for a while.

These two different perspectivesoften exist between carers and mental health/drug andalcohol services. Carers need to understand these difference of view so as not to add to the frustrations they may already have!

It is important to ask

questions and get support

where you can and when

you need it.

9

Tips for Carers

Do’s in a crisis situation3

• Do try to remain as calm aspossible, and if you can,create a calm environmentand try to limit any potentialdistractions i.e. TV, radio,music etc

• Do allow personal space; do not crowd your relative.Under no circumstancesattempt to physically restrainthem. If you fear they arepresenting a risk to others inthe house get everyone out ofthe house, don’t attempt toforce your relative/friend outof the house. Call for help orthe police if necessary

• Do contact the person’s GP,social worker or key worker ifthey have one for advice

• Do ask other people in theroom/ house, especiallystrangers, to leave. Talk onlyone at a time, speakingnormally and clearly as youusually do

• Do, if you can, ask simplequestions about thebehaviour that you areobserving, rather than stateyour opinion about what youbelieve to be happening

• Do look at your position in theroom, what message are youinadvertently giving out bysitting or standing where youare? What’s your bodylanguage saying? Are youactually looking hostile whilefeeling scared?

• Do try to stay calm. Eventhough it’s difficult, your highexpressed emotion like angerand frustration will only makethe situation worse.

10

6 Dealing with a Crisis

3 Do’s and Don’ts from: Through the Maze, Georgina Wakefield, Fivepin Publications, 2006

Don’ts in a crisis situation

• Don’t shout or speak loudly; if they are not listening to you try to imagine what mightbe going on in their head, no matter how strange it may seem

• Don’t criticise, they might notbe able to follow a reasonedargument at this point. Don’teven try to tell someone whatthey should or shouldn’t do

• Don’t make continuous eyecontact, it can be stressful and confusing

• Don’t argue. If they say theycan hear voices or arehallucinating say that you arenot aware of them but avoidsaying that they don’t exist

• Don’t get too close or try tofrighten or intimidate the person into compliance withyour wishes

• Don’t argue among yourselvesabout what to do and ensureyou don’t block any doorways

• Don’t repeat unnecessaryquestions or statements.

Carers, especially new

carers, can be thrown into a

set of circumstances which

can be hard to manage or

understand. Make contact

with other carers and use

their experience and

knowledge to help in a crisis.

11

You are entitled to:

Respect, sensitivity andprofessional consideration fromall support workers andpractitioners involved in thecare of your relative.

• A carer’s assessment4,5

(see more in next section)

You may also be entitled to:

• Financial support from thestate or local authority

• Support for the whole family

• Respite breaks so that you can keep well enough to care.

You are entitled to

information about:

• Your relative’s health problemand treatment – subject torules of confidentiality

• How to provide care

• How to get care and supportfor yourself, and

• Local support services, bothstatutory and voluntary.

Your entitlement to an

assessment; to direct

payments, benefits and

personal support –

Information available on the

Bolton local authority

website: www.bolton.gov.uk

12

7 Entitlements

4 National Service Framework for Mental Health; Dept of Health, 1999

5 Carers and Disabled Children’s Act 2001

If you provide a regular andsubstantial amount of timelooking after a relative or friendwith dual diagnosis, then aCarers’ Assessment could bevery helpful to you. Theassessment is completed atyour request, and can remainconfidential if required.

A Carers’ Assessment is not atest of what you do as a carer.

Carers are entitled to a carer’sassessment annually, whetheror not the service user isengaged with services or not.If you are providing significantcare then you will be entitled toa care plan of your own.

A Carers’ Assessment is youropportunity to talk about thethings that could make life easierfor you and to look at what wouldbe helpful in your situation.

An assessment may take

into account:

• The help the person you care for needs

• The help you are giving at that moment

• The support that may be provided.

A carer’s assessment is an

opportunity to look at your

needs, your health and

wellbeing and whether you

wish to receive support.

It will cover areas such as:

• Need for information

• Need for a break or time awayfrom the person you are caring

• A need for practical,emotional or financial support

• Look at opportunities forleisure, employment and a‘life of your own’ alongsideyour caring role

• Contingency planning andmanaging a crisis

• It will also take into accountany cultural, spiritual, gender,lifestyle or other needs youmay have.

13

8 Carers’ Assessments

As a carer you will be entitled

to an assessment if:

• You provide ‘regular andsubstantial’ amounts of careor support, and

• You request an assessment.

The assessment is reviewed onan annual basis to see if yourcircumstances have changedand if any change to thesupport offered are necessary

If you are a carer of a personwith dual diagnosis you shouldbe automatically offered anassessment, but don’t takeanything for granted…

As a carer you should also beable to contribute to thediscussion about the needs ofthe person you care for (theirassessment). If you do notwish to have an assessment in your own right, there are still services which areavailable to you.

Regular and Substantial

amounts of care or support

is where a carer:

Provides long hours of help(approx. 20 hours per week),and carries out a range ofhelping activities, and/or islikely to provide both personaland physical assistance.

You can always talk to yourassessor to see if:

• Your caring role is substantial

• Your caring role is less than20 hours per week butintensive, and there is a risk toyour caring role not beingsustainable.

To request an assessment

speak to the Care

Co-Coordinator for the

person you are caring for.

14

“Confidentiality is often seen asa problem area in creating aTriangle of Care. The therapeuticrelationship between workerand service user is based onhaving ‘confidence’ or trust thatwhat is said will not bedisclosed without theiragreement. This agreementneeds to be considered in thecontext that the carer may havekey information relevant to safeand effective care planning forthe service user. They may also be required to take onroles and responsibilities toachieve the best care plan inthe home or once the serviceuser is discharged.

Carers should be encouragedto share this information, notonly because it will help theclinical assessment andtreatment, but also because itgives them a positive role andconfidence in the programme.Consideration needs to begiven to the fact that crisis,especially involving the need

for compulsory treatmentand/or admission may provokeuser/carer conflict that maytemporarily prevent consent to sharing information.”

The Triangle of Care

Staff should share generalinformation and appropriatepersonal information with youto assist you in managing ahealthy balance between beingkept informed and respectingyour relative/friend's privacy. It is often useful for carers toreceive written as well asverbal information on subjectssuch as mental health services,rights of the person if they aredetained etc. This might beparticularly important if thecarer is new to the role asnegotiating mental health anddrug and alcohol services canbe a daunting experience andit might help the carer to havean idea of the care theirrelative is likely to receive.

15

9 Service User Confidentiality

Professionals should seecarers as potential partners insupporting mental health carepathways. Through effectivecommunication, morecollaboration is possible, witheveryone understanding theresponsibilities and rights,needs and concerns of eachother. Many of the conflicts that arise through informationsharing can be averted ifa collaborative care model is promoted.

More information is availablefrom Rethink's e-learningpackage: www.carersandconfidentiality.org.uk.

Issues around confidentialityshould not be used as areason for not listening tocarers, nor for not discussingfully with service users theneed for carers to receiveinformation so that they cancontinue to support them.Carers should be givensufficient information, in a way they can reallyunderstand, to help themprovide effective carei.

Carers give:

Their understanding. Often carersare the ones who know the serviceuser best and have dealt withtheir welfare over many years.

Their commitment. Whileservices and the people theyemploy are constantly changing,carers are frequently the onlyconstant service users may have.

Their patience. Both crises andthe seemingly endless round of day-to-day problems that arise withservice users with more complexneeds mean that considerablesacrifices may be made by carers.

Their willingness to share. The well-being of the serviceuser and their carers improveswhen they are surrounded by ateam of professionals workingtogether towards recovery.

So why do they so often

feel left out?

The service user has not giventheir consent to the sharing ofinformation with the carer.

16

6 Developing Services for Carers and Families of People with Mental Illness, DoH, November 2002

17

Professionals involved in serviceuser care have a duty to followprofessional codes of practice,common law and statuteregarding confidentiality.

At times of crisis, relationshipscan be strained and the familymay be exhausted andstressed. The professionalsmay get a false picture of thetrue long-term situation.

Good practice7 forprofessionals means youcan expect to be given:

• The diagnosis (if there is a confirmed one, often thiscan take time)

• Information on outcomes and behaviour

• Benefits and side effects ofmedication

• Local in-patient andcommunity services

• The Care ProgrammeApproach (CPA)

• Information about localsupport groups.

…help to understand:

• The present situation

• Confidentiality restrictions ofthe service user

• Patient treatment plan and its aims

• The relevant elements of awritten care or crisis plan

• The role of each professionalinvolved, and

• How to access help,including out-of-hours.

…to receive:

• Opportunities to see aprofessional alone

• Rights to your ownconfidentiality

• Involvement as a valuedcontributor

• Respect for your views and concerns

• Emotional and practicalsupport

• An assessment of your ownneeds and a care plan.

7 Adapted from Carers and Confidentiality in Mental Health, Royal College ofPsychiatrists, 2004

Carers need information.Carers may not always find outwhat they need to know aboutthe person they are caring for.This checklist is designed tohelp you get all the informationyou can about the diagnosisand treatment of the personyou care for.

You should be able to get some of this information directly from other members of the clinical team involved,such as nurses, the drug andalcohol team (DAT), socialworker, psychologist,occupational therapist etc, orfrom written information thatthey can provide.

Although you may not want toask all the questions listed, youmay find that they help you inpreparing to meet the doctor orpsychiatrist and the care team.Not everyone will need all theanswers to all these questions at the same time. You may havequestions that are not coveredhere. However this is providedas a framework for decidingwhat you do need to know8.

A psychiatrist will be able to

give you information about

your service user’s condition

and care but specific clinical

details may be confidential.

18

10 Questions for the Psychiatristand/or Care Team

8 Adapted from a Checklist for Carers of People with Mental Health Problems, Royal College of Psychiatrists 2004

About the illness

What is the diagnosis or problem?

Is a diagnosis necessary?

Why has this happened?

Will they recover?

About a diagnosis

What symptoms suggest thisdiagnosis?

What are the causes?

What is likely to be the course ofthe illness?

Where can I find more information?

About the assessment

What assessments have been carried out?

Will there be more assessments?

What are the drug/alcohol problemsdiagnosed?

What will need to be done about them?

Has culture and background beenconsidered?

About care and treatment

What are the aims of proposed careand treatment?

What is care co-ordination and “CPA”?

What does the care co-ordinator do?

Who else is involved in care andtreatment?

What happens if they refuse treatment?

My own questions:

About information sharing

How much information will I get?

Will I be informed of meetings and reviews?

Can I see you on my own?

Can I speak confidentially about theservice user?

About the carer’s role

What can I do to help?

Are there local self-help/other groups?

Where is there advice and training for carers?

About getting help

How can I get in touch with you?

How do I arrange to see you?

Who do I see if I’m worried abouttheir behaviour?

Who do I contact in an emergency?

About medication

What is to be used and how?

What are the benefits?

What are the side-effects?

What symptoms might mean achange of dose?

What will happen if they stop takingmedication?

What do I do if they stop taking themedication?

Where can I find more information on it?

19

In England there is arequirement for carers to beconsulted, with or without theservice user’s consent, before aSupervised Discharge Order9

can be implemented.

However, guidance from theDepartment of Health aboutprotecting service userconfidentiality is inconsistentover the question of whether or not carers are members ofthe service user’s ‘care team’ inthe community and so entitledto detailed information aboutthe service user’s discharge,even where it can be shownthat the informal carers are akey part of the supportprovided in the community.

Government guidelines to

mental health services state

that they have a duty to

inform and involve carers.

Getting agreement

First step: Get agreement withthe person you are supportingand their treatment team aboutthe level of your involvementand access to information aboutwhat’s happening and what’sproposed. This probably needsto be done at a time when theservice user is reasonably welland certain protocols can beagreed between principlecarers, the treatment team andthe service user about who’sinvolved and who isn’t.

Carers should also be clear towhat extent they themselves areseen as one of the “treatmentoptions” for a particular serviceuser. Treatment teams may assumethat a parent who has beenlooking after a son or daughterfor 5 or 10 years will simply goon doing so on discharge.

A care plan is a writtendocument produced by thecare team which identifies:

a) the patient

20

11 Carer Consultation/Involvement

9 Mental Health (Service users in the Community) Act (1995)

b) their current situation

c) who is involved in their care

d) what roles the care team has

e) what the objectives are fortreatment and on-going support.

Key questions which require

answers at the care planning

stage are:

• Does the person being caredfor actually understand what’son offer and theconsequences of decliningthat kind of support?

• How insightful is the person tothe conditions affecting theirmental and physical health, and

• How able are they to think their way through the treatment options?

If the service user has difficultywith these questions, thetreatment team needs toconsider whether the serviceuser has the capacity to make ajudgement about the optionsavailable and, consequently, therole of informal carers.

Carers may have other

questions which they should

ensure are answered by the

treatment team:

• What, if any, is the possibleharm that could come tocarers – or the service user –and what is the probability ofit occurring?

• What alternative treatmentoptions are there that couldreduce the risk of harm?

• What about broader familyinvolvement? There areissues of confidentiality thathave to be considered aswell as the presence ofvarious tensions and rivalriesthat may circulate through afamily. The treatment teamneeds to be mindful thatonce the immediate crisis haspassed how likely is it thatthe service user would see awider family involvement ashaving been something thatthey wanted or not.

21

In 2004 the mental health charityRethink carried out researchinto dual diagnosis and issuedits findings in the report: “Livingwith Severe Mental Health andSubstance Use Problems.10”(Rethink, 2004) For theparticipants, both service usersand carers, the types of issuesencountered were very typicalof what carers generally sayabout these complex problems:

They were concerned aboutthe diagnosis process. Somecarers thought it helpful butothers didn’t have the sameoptimism. Some said it mayprovide access to specialistservices, but others saw thepotential for increased labellingand stigma. The diagnosis wasseen in some cases toincrease dependency,reducing a person’s motivationto self-manage. For othersthere were concerns over theperceived unreliability of bothassessment and diagnosis.

Service users were almostequally divided on whethermental health problems orsubstance use were mostproblematic for themselves. This illustrates the highlyindividualised nature of theseissues. Among carers in thestudy, substance use washighlighted as the most difficultthing to deal with in the family.

Both groups noted thatsubstances had sometimesappeared to enhance well-being in the short-termwhile adding to long termdifficulties of withdrawal.However they felt long termsubstance use was particularly problematic andimpacted on finance, healthand well being.

22

12 Useful research

10 www.rethink.org/about_mental_ illness/dual_diagnosis/useful_ contacts.html

Common themes identified byboth service users and carerstalking about their relatives wasthe sense of shame and guilt,loss of motivation or purpose inlife, low self-esteem, and lowself-confidence. The mostfrequently cited impacts oncarers were: stress,powerlessness, anxiety andpessimism for the future.

For service users the socialimpacts were most clearly seen in relationships with family and others, inability to obtain employment and their involvement with crime to fund drug and alcoholaddictions. Carers, speakingfor service users however,identified the social impacts as social isolation, stigma andlack of employment.

Carers, speaking for their ownexperiences saw the impact on the whole family, andparticularly family relationships,as most noted alongside theirfear of physical and verbalabuse and loss of personalfreedom as a result of theircarer role. Both service usersand carers talked about thefinancial pressures as a resultof living with a dual diagnosisboth in terms of finding money for the addiction and in some cases families payingfor private treatment in anattempt to get adequate help.This was considered to addadditional stresses to analready stressful situation.

23

The latest Department ofHealth Carers Strategy statesthat: ‘Carers will be universallyrecognised and valued as beingfundamental to strong familiesand stable communities. Supportwill be tailored to meet individuals'needs, enabling carers tomaintain a balance betweentheir caring responsibilities anda life outside caring, whileenabling the person theysupport to be a full and equalcitizen.’ (Recognised, valuedand supported: next steps forthe Carers Strategy (Nov 2010)www.dh.gov.uk/en/SocialCare/Carers).

Carers need hope that theloved one they care for canrecover from this complex andoften challenging condition,although it may take some timebefore they reach that point.However, if support is availableand you as a carer are betterequipped to know the bestpath to go down to get theright help for you and theperson you care for.

We hope this booklet hasprovided you with some usefulinformation and helpfulguidance . Remember talk tothe care team: Get supportfrom other carers when andwhere you can: Use thisbooklet as a guide and aprompt whenever you need it and use the informationprovided to help navigate tofind the best pathway for youand the person you care for.

“Recovery means beingempowered to search for a better quality of life. It meansfulfilling potential, personalgrowth, and having a purposein life, through inclusionalongside others incommunities. It means finding friendship, happinessand wellbeing. Above all,Recovery gives back hope.”

Taken from the Stockport

Recovery Network website

www.stockportrecoverynetwork.org.uk

24

13 The way forward

There are several types ofmental health problems andthey can be categorised in anumber of ways. There is nocomplete agreement eitherabout the categories of mentalillness or about the symptomsof each but the following aregenerally accepted as reliable.

A: Anxiety

B: Bi-polar disorder (whichused to be called manicdepression)

C: Alzheimer’s Disease(Dementia)

D: Depression

E: Eating disorders

F: Obsessive compulsive disorder

G: Personality disorder

H: Schizophrenia

A: Anxiety

Anxiety disorders are thought tobe rooted in different types ofstress. The stress which causessomeone’s anxiety may not be inthe present or even known to theindividual or their carers. Oftenpeople are completely bewildered

by why they are suffering suchunpleasant symptoms. Indeed,looking for answers in placeswhere the symptoms appear mostvividly, either at home or at work,may not reveal much of the rootcauses. The symptoms includeloss of concentration, persistentfear of the worst possibleoutcomes, disturbed sleep,impatience and intolerance etc.Other conditions such as phobiasand panic disorders are usuallyincluded under this heading.

B: Bipolar Disorder

This disorder is characterised byradical mood swings. These arenot the same as the commonchanges of mood that manypeople experience. The moodscan swing from deep despair tointense elation or from a “normal”state to one of these extremes.How the two stages are linked intime is different in all cases, somepeople may switch from one typeof state to another quite rapidlygiving the impression that they arealternating between the two;others may remain depressed forlong periods with only rare episodesof being normal or “high”.

25

Additional Information

C: Alzheimer’s Disease

(Dementia)

Alzheimer’s (which is just one formof dementia) is often notconsidered along with mentalillness but for carers particularly,the effects on family life andnormal relationships can be muchthe same. The principle symptomof Alzheimer’s is memory losswhich leads to confusion abouttime and place. Individuals mayalso neglect themselves or putthemselves at risk. Alzheimer’susually affects people in later life,particularly those over 80, but itcan happen earlier. Wherereasoning becomes muddled, oractions become unpredictableand incomprehensible, carersface many of the same pressuresof those who are caring for peoplewith other mental health problems.

D: Depression

Depression is usually a complexgroup of symptoms which togethercan, if not responded to, contributeto long-term emotional andpsychological disability. Some levelof depression is usually found in allforms of mental illness particularlyin anxiety states, bi-polar disorder,schizophrenia and obsessivecompulsive disorder. For carersthis condition can be very wearing

because the cared-for person canseem relentlessly negative and de-motivated. Depression can beaddressed through varioustherapies other than medicationand of all the conditions,depression is the one which ismost likely to be improved throughtalking treatments.

E: Eating Disorders

Eating disorders – which mostlyaffect females – are often verydifficult situations for informalcarers to manage because theindividual is often concealing theproblem from those they’re closeto. Additionally, at the route ofsevere eating disorders may be in the types of relationships whichthey already have with familymembers. Bulimia is characterisedby frantic bingeing and drasticpurging and is the most commonform of eating disorder. Peoplewith anorexia typically have a very low body weight which canproduce serious medicalconditions over time.

Carers often feel that theconditions are about attitudes tofood or eating and may try toencourage individuals into dietarychanges but these responses arelikely to fail because the causesare much more to do with feelingsof not being in control which in

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turn often have roots in pooradaptation in childhood.

F: Obsessive Compulsive

Disorder

OCD, as it is commonly called, isactually two related conditions.Obsessions are intense bursts ofideas, words, images,uncertainties, doubts and so onwhile compulsions tend to be theactions arising from theseobsessions as individuals try tomediate the intense distress theycause. People may adopt certainrituals to enable them to deal withthe obsessions and theappearance of these is oftenwhen carers become aware thatthere is a serious problem. For theindividual, failure to complete thecompulsive action/s can result insevere anxiety or even a panicattack. Non-professional carersneed to be aware of the complexbackground to these conditionsbefore adopting a strategy to help.

G: Personality Disorders

Personality disorders are commonand often disabling conditions.Many people with personalitydisorder are able to negotiate the

tasks of daily living without toomuch distress or difficulty, butthere are others who, because ofthe severity of their condition,suffer a great deal of distress, andcan place a heavy burden onfamily, friends and those whoprovide care for them.11

Personality disordered individualsare more likely to suffer from alcoholand drug problems and are alsomore likely to experience adverselife events, such as relationshipdifficulties, housing problems andlong-term unemployment. Peoplewith personality disorders aremore vulnerable to otherpsychiatric conditions, and inparticular, they are more likely tosuffer from depression. Moreinformation is available atwww.personalitydisorder.org.uk/

H: Schizophrenia

Schizophrenia is a mental disorder that affects around 1 in every 100 people.

The main symptoms arehallucinations (hearing voices),delusions (a firm belief insomething that isn’t true) and changes in outlook and personality.

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11 No longer a diagnosis of exclusion. Policy implementation guidance for the developmentof services for people with personality disorder, National Institute for Mental Health inEngland (NIMHE) (2003)

Support from families and friends,psychological treatment andservices such as supportedhousing, day care andemployment schemes are vitally important.

People who have schizophreniaare rarely dangerous. Any violentbehaviour is usually sparked offby street drugs or alcohol, whichis similar to people who don’tsuffer from schizophrenia. If youhave an internet connection, trythese sites for more informationabout the types of mental illnessand the symptoms.

www.bbc.co.uk/health/conditions/mental_health

www.mind.org.uk/Information/Factsheets

www.sane.org.uk/public_html/About_Mental_Illness/Mental_Illness.shtm

Drug and AlcoholInformation

There are many different types ofdrugs, including alcohol thatpeople use, abuse and canbecome dependant on. Themajority of people who experiencemental health problems use eitheralcohol and/or cannabis, but oftenthese drugs will be used incombination with other substancessuch as stimulants. You can findinformation about their effects,both positive and negative, therisks of using them, and help withstopping, cutting down orminimising the risks that comewith using them by logging on towww.boltondrinkanddrugs.org

Local services in Bolton

There are a number of agencies inBolton who provide treatment forpeople who have a drug oralcohol-related problem:

Bolton Drug Service (BDS)provides counselling and medicaltreatment for drug use, and theCommunity Alcohol Team (CAT)for alcohol use.

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12 Help is at Hand, Royal College of Psychiatrists, from www.rcpsych.ac.uk/mentalhealthinformation/mentalhealthproblems/schizophrenia/schizophrenia.aspx

Addiction Dependency Solutions(ADS) are the first port of call foralcohol users, they providecounselling and will refer peopleon to the CAT if this is necessary.The Moving On Service, also runby ADS, provides counselling-based treatment, plus supportaround education, training andemployment for drug users.

Some people decide they want tostop using drugs altogether. Thereare options for people who want tofind out more about stoppingcompletely in the communityabstinence service, which is runjointly by ADS and Bolton DrugService. Safe injecting equipmentand advice are available from theneedle exchange at BDS.

It is important to remember that'Treatment' is not just aboutmedication. It can focus on manydifferent aspects of your life, likeaccommodation, work, andrelationships.

Treatment choices can include one,or more likely a combination, of:

• Information and advice

• Counselling

• Needle exchange

• Medical – basic health care, andprescribing of substitutes (e.g.methadone) for some people

• Detoxification in the communityand support to help you stayabstinence

• Detoxification in a residential unitif this is right for you

• Residential rehabilitation, again,if this is the best thing for you

All services are confidential,unless the worker believes thatyou or somebody else, particularlya child or children, is in danger, orif there is a police investigationinto certain types of crime.

All Bolton’s drug services areaware that different people havedifferent wants and needs, andthe drug worker or alcohol workerwho works with you will make sureyour treatment is focused on yourgoals and make your treatmentjourney personal to you.

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Local

Bolton Community Alcohol

Team (CAT)

Giles House, 43 Chorley NewRoad, Bolton BL1 4QR

Tel: (01204) 380948

ADS (Addiction Dependency

Solutions) – Alcohol Treatment

and The Moving On Service

20 Wood Street, Bolton BL1 1DY

Tel: (01204) 393660

ADS is open Monday to Friday:9:15am to 5:00pm

ADS is a voluntary sector(charitable) organisation that works with drug and/oralcohol users.

Bolton Drug Service (BDS)

Tel: (01204) 544640

Web: www.boltondrinkanddrugs.org

Abstinence Service for

Drug Users

Bentley House, Weston Street,Bolton BL3 2RX

Tel: (01204) 544640

The Community AbstinenceService is available Monday toFriday 9:00am to 4:50pm andThursday 9:00am to 6:30pm

Arch Initiatives

Trident House, 77 ManchesterRoad, Bolton BL2 1ES

Tel: (01204) 388962

Alcoholics Anonymous

Tel: 0845 769 7555

Narcotics Anonymous

Tel: 0300 999 1212

SMART Recovery UK

Tel: 0845 603 9830 or (01463) 729548

National

Addaction

Web: www.addaction.org.uk

Helps individuals and communitiesto manage the effects of drug andalcohol misuse and has over fiftyprojects in England withincommunities and prisons.

Adult Children of Alcoholics

A fellowship of men and womenwho have been raised in analcohol environment and whoneed support.

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Resources

Al-Anon Family Groups

Web: www.al-anonuk.org.uk

For families and friends ofalcoholics. Al-anon Family Groupsprovide understanding, strengthand hope to anyone whose life is,or has been, affected by someoneelse’s drinking.

Alcoholics Anonymous

Web: www.alcoholics-anonymous.org.uk

Fellowship of men and women who share their experience,strength and hope with each other that they may solve theircommon problem and help othersto recover from alcoholism.

Alcohol Concern

Web: www.alcoholconcern.org.uk

The national agency on alcoholmisuse. The Mental Health and Alcohol Misuse Projectprovides fact sheets, a newsletter and web pages to share good practice amongclinicians and professionals.

Carers UK

20-25 Glasshouse Yard, LondonEC1A 4JS

Tel: 020 7490 8818;Carersline: 0345 573 369

The national voice of carers. They provide advice for carersacross the UK.

Drinkline

Freephone: 0500 801 802

Tel: 020 7332 0202 (Open 11am-11pm Monday-Friday, dial andlisten service 24 hours a day)

National Alcohol Helpline.Provides information and self-helpmaterials, to callers worried abouttheir own drinking and support totheir family and friends.

DrugScope

Web: www.drugscope.org.uk

DrugScope provides informationand publications on a wide rangeof drug related topics.

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FRANK (formerly the National

Drugs Helpline)

Freephone: 0800 77 66 00

Confidential, daily 24 hour service:

Web: www.talktofrank.com

Campaign from the Department ofHealth and the Home Office,supported by the DfES.Information and advice on drugsto anyone concerned about drugsand solvent/volatile substancemisuse, including drug misusers,their families, friends and carers.

MIND (National Association

for Mental Health)

Help Line: Mind info-line: 020 8522 1728/0845 766 0163

Local support groups of varioussorts. Comprehensive website withadvice, information and backgroundbriefings on a wide range of mentalhealth issues and mental healthproblems including dual diagnosis.

Rethink severe mental illness

Web: www.rethink.org

Carers’ website:www.rethinkcarers.org

Runs over 400 mental healthservices, network of more than 120support groups across the country.

Rethink National

Advice Service

Provides information and adviceon all aspects of mental illnessand issues affecting people with mental illness to people with mental illness, their carers, friends and family and professionals.

SANE

SANELINE: 0845 767 8000

Concerned with improving the lives of everyone affected by mental illness.

Turning Point

Web: www.turning-point.co.uk

Social care charity providingservices for people with complex needs across a range of health and disabilityissues primarily substancemisuse, mental health andlearning disability.

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Scenes

Family Members’ Perspectives 1

Family Members’ Perspectives 2

A Father’s Perspective

Benefits Of Involving Carers

Caring Changes Lives

Carers’ Contact With Services

Behavioural Family Therapy

What Carers Find Helpful

Credits

© Care Services Improvement Partnership 2007

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Just Because

Just because I have a label, doesn’t mean I cannot feel.

You say I live in a fantasy, but to me it’s very real.

When I speak, my words may come out wrong – but you don’t listen anyway.

Who cares enough to listen, and HEAR what I have to say?

Just because I have a label, it doesn’t make it true.

If fate had dealt us a different hand, all this would be happening to you.

Am I just an inconvenient statistic, for you to dismiss as you roll your eyes?

Be careful how you judge me, condemn me, or despise.

For I was once like you my friend,and maybe I will again.

So tread gently on my dignity,and I’ll pray you never share my pain.

© This poem was written to help raise Mental Health Awareness and to highlight issues from the Patients and Carers Perspectives. All Copyrights remain the sole property ofthe Author – CHRISTINE KAY 2007