PERSONAL HEALTH BUDGETS GUIDE Implementing · PDF filePERSONAL HEALTH BUDGETS GUIDE Implementing effective care planning. Authors: ... n be enabled to create their own care plan,

PERSONAL HEALTH BUDGETS GUIDE

Implementing effective care planning

Authors: Rita K Brewis, Gill Stewart and Jo Fitzgerald, with members of the personal health budgets peer network


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1 Introduction 3

2 Creating the local framework 6

3 The individual care planning process 18

4 Conclusion 30

5 References 31

Appendix 1: Developing the local approach – 32questions to consider

Appendix 2: How peer support can help 35

Appendix 3: Risk enablement example 36

Contents

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A personal health budget is an amount of money to support a person’s identifiedhealth and wellbeing needs, planned and agreed between the person and their local NHS team. Our vision for personal health budgets is to enable people with long term conditions and disabilities to have greater choice, flexibility and controlover the health care and support they receive.

What are the essential parts of a personal health budget?

The person with the personal health budget (or their representative) will:

n be able to choose the health and wellbeing outcomes they want to achieve, in agreement with a healthcare professional

n know how much money they have for their health care and support

n be enabled to create their own care plan, with support if they want it

n be able to choose how their budget is held and managed, including the right to ask for a direct payment

n be able to spend the money in ways and at times that make sense to them, as agreed in their plan.

How can a personal health budget be managed?

Personal health budgets can be managed in three ways, or a combination of them:

n notional budget: the money is held by the NHS

n third party budget: the money is paid to an organisation that holds the money on the person's behalf

n direct payment for health care: the money is paid to the person or their representative.

The NHS already has the necessary powers to offer personal health budgets, although onlyapproved pilot sites can currently make direct payments for health care.

What are the stages of the personal health budgets process?

n Making contact and getting clear information.

n Understanding the person's health and wellbeing needs.

n Working out the amount of money available.

n Making a care plan.

n Organising care and support.

n Monitoring and review.

Personal health budgets

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Personal health budgets allow people to move from a world where others know best to one where their input is valued above all others, but not inisolation from others. It is a way toallow the person to be at the heart of theplanning process, identifying with key health professionals the things thatreally matter to them and which allowthem to lead a safe and fulfilling life.

- Personal health budgets peer network, 2012

This guide defines a personal health budget,its purpose, and what is distinctive about thisway of working.

For healthcare professionals, it describes thepreparation needed to develop a localframework that can enable best practice. It isimportant to put this groundwork in place,otherwise people will find it harder to createand implement their care plan.

The guide also summarises the essential topicsthat must be covered and recorded duringcare planning, and describes how thesediscussions may best take place.

For people who have a personal healthbudget, this guide explains what a care plan isand how it is different from the way the NHShas worked previously. It shows how personalhealth budget holders and family memberscan work with healthcare professionals todevelop a local approach.

The function of the local framework forpersonal health budgets is to make sure boththe person and the health professional knowwhat is expected of them, so that the careplan can be created, authorised and put intoaction successfully. The framework informsand shapes each person’s conversation withtheir health team and supports professionals’shared decision making.

Personal health budgets promote a shift inpower and decision making to enable achanged, more effective relationship betweenthe NHS and the people it serves. So thepersonal health budgets planning process isnot simply a document or template – it is anactive, ongoing relationship and dialogue,with changes of role for people, healthprofessionals and commissioners.

The focus is similar to several recent NHSinitiatives, including the diabetes year of care,1

shared decision making,2 and long termconditions planning.3 The aim is to improvethe dialogue between people and their healthprofessionals to combine expert clinicalknowledge with a person’s unique experienceand capabilities – their preferences, creativityand motivation.

At the heart of a personal health budget is acare plan developed in partnership betweenhealth professionals and people needingtreatment. In life-threatening situations,people usually want to hand over control to

1 Introduction

skilled professionals. But there is growingrecognition that the effective management of chronic disease depends more on whatpeople do than on professionals. People play a central role in managing their ownhealth, and personal health budgets are one important aspect of this. The RoyalCollege of General Practitioners describes care planning as being about:

Making more effective the dialogue betweenthe patient and the GP that is so vital to thecare we provide every day, and changing the doctor–patient relationship into adoctor–patient partnership. [Care planning]will not only improve the quality of life forpatients with long term conditions but willalso give them more control, better healthand better well-being.4

For people whose lives are highly dependenton healthcare, creating a plan that addressestheir health needs holistically means that theycan integrate health with other vital aspectsof their life that affect their health – work,education, housing, family and community. A care plan that works well for importantaspects of daily living will also support theeffectiveness of a person’s health treatment.

Personal health budgets are not only aboutmoney, and not just about enabling choice.They draw on people’s skills, knowledge andnatural motivation, and combine them withhealth professionals’ clinical expertise andunderstanding of the existing evidence for the effectiveness of different treatments.

Learning points

A holistic approach: good care planning isabout understanding the impact of a person’slong-term health condition or disability on thewhole of their life.

Self determination: while it is impossible toachieve a perfect life, and illness can restrictpeople’s aspirations, personal health budgetscan be used to support people in manydifferent health circumstances to haveincreased control through shared responsibility.

Equality: under the Equality Act 2010,providers must make services accessible to alland meet different people’s needs across allprotected characteristic groups.

Capacity: in the case of people who do nothave capacity to make their own decisions,there can be best interest decisions, guided by the principles of the 2005 Mental CapacityAct. This also enables people with fluctuatinghealth conditions to plan for a time whenthey may not be able to discuss options ormake their own decisions.

Evolution and principles ofpersonal health budgets

Personal health budgets and shared decisionmaking arose both within the NHS and inmovements for change driven by the people it serves. Campaigners in disability rights,survivors of mental health services, expert

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patients and family carers have long beencalling for people’s right to an independent andfulfilled life as part of their local communities,with as much control over their treatment andongoing support as they wish to take.

The Royal College of General Practitionersdescribes care planning as a powerful way ofcreating an environment that helps cliniciansto support self management:

“When patients self care, and equally feelsupported in doing so – they are more likelyto have greater confidence and a sense ofcontrol, to have better mental health and lessdepression, and to reduce the perceivedseverity of their symptoms, includingexperienced pain.4

Similarly, the Health Foundation, summarisingthe evidence for self management, describes:

“A fundamental transformation of thepatient–care giver relationship into acollaborative partnership.”5

So the combination of NHS initiatives andpersonal drivers for change carries thepotential for significant progress.

The principles underlying personal healthbudgets are that they must:

n uphold NHS values, being free at the point of delivery and not dependent on ability to pay

n support safeguarding and quality

n support the tackling of inequalities andprotection of equality

n be voluntary – no-one will be forced to have a personal health budget

n support the making of decisions as close to the person as possible

n support working in partnership.

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The message from all the sites involved inthe Department of Health’s personalhealth budgets pilot programme6 is that it is critically important to get thegroundwork right when offering peoplepersonal health budgets. Making thesebudgets work well depends on all thoseinvolved making significant changes totheir thinking, feeling and behaviour. Thisis a process that can’t be rushed and thatrequires a clear and mutually understoodcommon purpose and framework.

Personal health budgets enable people tocreate their own effective and efficient healthplan, based on a new understanding of whatmoney is available to them both at the outsetand over time.

The transparency about the money is reallyempowering and shifts the conversation.

- NHS Continuing Healthcare commissioner in Oxfordshire

But money alone will not achieve the mainpurpose. Several other critical factors must bein place to ensure equity of access to this newway of working together. These critical factorsare what make up the local framework.

What would any of us want to know if wewere presented with an opportunity to dosomething new and different from our usualexperience? Thinking about this question is

the most helpful starting point in defining the deal between the NHS and a personalhealth budget holder, outlined in the local framework.

Personal health budgets offer a newrelationship or contract: sharing power andresponsibility, shifting control and decisionmaking towards the person, and opening upto new, flexible ways to achieve healthoutcomes within the context of a person’swhole life. It has clear and simple rules. At itsbest, the process of personal health budgetplanning is a well thought through, carefullyconsidered and simple approach.

This guide is based on learning from pilot sites6

where all the people involved in personalhealth budgets came together to share theirunderstanding of the local processes. Peoplewith budgets, clinicians, personal healthbudget brokers and health and social servicescommissioners discussed central questions aboutpersonal health budgets, and shared theirperceptions and experiences (see page 31).

Feedback demonstrates that it is crucial tohave an explicit shared understanding of thelocal framework before people start to discussand create their care plan. The following areessential elements of a framework withinwhich effective care planning can take place,which should be built by both clinicians andbudget holders in partnership.

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2 Creating the local framework

n Develop a peer network and involveeveryone from the start.

n Clarify the purpose and principles.

n Be clear about all aspects of the money –when and how a budget is offered; how much money is being allocated to the person; the flexibility of spending it;and what the monitoring and reviewprocess will be.

n Develop and provide information,support and training.

n Agree a local approach to choice,safeguarding and risk enablement.

n Agree the criteria for sign off.

n Agree the process of authorisation and appeals.

n Agree how care plans will be monitoredand reviewed.

n Gather and learn from feedback.

n Develop a local communication strategyand workforce development plan.

Develop a peer network andinvolve everyone from the start

Don’t try and figure it all out alone first.

- NHS Continuing Healthcare manager

Care planning with a personal health budgetis about a change in the relationship betweenthe person and their clinician, so it’s essentialto involve both groups in developing new

ways of doing things. Other people also needto be involved – family carers, healthcarecommissioners, health and social caremanagers, finance managers, administrators,and voluntary sector providers – to ensure theframework for care planning meshes with thewider systems within the NHS, the localauthority and the local community.

When making cultural and professionalchanges in a complex system, it’s important toengage people from each main part of thatsystem, so that everyone can help developand have ownership of the changes. Thismeans everyone’s creativity is engaged, newideas are challenged and made more robustthrough discussion, and resistance to changelater in the process is avoided.

Including people with direct experience ofhealthcare treatment as equal participantswith health professionals and commissionersdemonstrates that their views are valued andrespected, and reflects one of the centralfoundations underpinning personal healthbudgets. Inviting social care staff to be part of developments indicates the wish for ajoined-up, integrated approach – the focus isthe person rather than the different servicesystems and organisations.

Experience in the pilot sites has shown howdifferent people’s perceptions and experiencesare when everyone is brought together. Ifcollaboration and feedback systems are notsecurely in place, well intentioned policies canhave unintended consequences of which theNHS may be unaware.


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The NHS is an institution with its ownlanguage, culture and customs, and it willtake time and practice for people who are notaccustomed to these entrenched mechanismsto be able to take part in discussions.Investment in developing people’s skills andconfidence to engage fully in thedevelopment of the local framework for careplanning will yield dividends, as expressed bya manager of a pilot site:

Patient involvement in developing personalhealth budget systems will ebb and flow aspeople’s conditions fluctuate, so it’s ok tostart with a very small group of people andbuild a broader group over time – and investin that group of people.

- NHS Continuing Healthcare manager, pilot site

People from different perspectives starting towork together can be complex. Trust buildsslowly and gradually. If people feel moreconfident, they are able to challenge eachother respectfully. None of this happenswithout good leaders acting in a co-ordinating role to nurture and support theprocess of development.

In the personal health budgets pilotprogramme,6 to ensure peer input happened,the Department of Health invested in a part-time co-ordinator’s role, and also fundedpeople’s travel expenses so that they couldlink up nationally, face to face. The DH alsorecognised and supported the need forpeople to meet initially as a separate group so that they could gain knowledge andconfidence before joining the work to

develop national guidance. For localdevelopments, some investment bycommissioners will also be necessary.

Jo Fitzgerald, the leader of the personalhealth budgets peer network, describes how peer support can best be enabled, and why it is important:

We have clearly established that involvingpeers in the development of personal healthbudgets is crucial. Peer to peer input fostersconfidence. We often talk about culturalchange in the NHS and how the way peoplethink and behave needs to adapt to realisethe vision we all share for improved outcomesfor people. The same needs to happen forpeople and families if they are going toembrace the opportunity to take more controlover their health and wellbeing. They need tobelieve that change can happen.

The most powerful way to communicate newpossibilities is for peers to talk to each other.There is an innate trust between people andfamilies with shared experiences. A robuststrategy for the dissemination of accurate anduseful information is vital, along withdeveloping a regular feedback loop. This canbe done in a number of ways, but one of themost robust is to involve people at every stageof development by creating a peer network.

Too often, people with direct experience areinvited to participate when importantdecisions have already been made. There’s atendency to believe that clear plans need tobe in place and a strategy agreed beforepeople with direct experience can be invited.


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While involving everyone at the beginningmay feel uncomfortable, that’s exactly when itshould happen.

See the Personal health budgets toolkit:‘Working together with people and families’.

Clarify the purpose and principles

Health staff must be able to explain to peoplewhat a personal health budget is, and what itis for, in a straightforward and simple wayand to dispel any misunderstandings or fears.When setting up the personal health budgetframework, and when implementing the careplanning process, the most helpful guidingprinciple to underpin all decision making is toremember the purpose of the budget:

You always need someone in the group to say we need to go back to what we are trying to achieve.

- NHS Continuing Healthcare commissioner in Oxfordshire

It takes time and numerous conversations tobuild knowledge and consensus about thepurpose and use of personal health budgets.People should be encouraged to ask questionsas fresh issues arise, and supported to debatethe shift in relationships and what this meansto them personally and professionally. Once agroup of key people locally have a sharedunderstanding of the purpose and distinctivecharacteristics of a personal health budget,they can then work out, with the aid ofnational learning and emerging policy, whattheir local framework is going to be.

See the Personal health budgets toolkit:‘Introduction to personal health budgets’.

Be clear about all aspects of the money

When and how is a budget offered and managed?

People want the opportunity of a personalhealth budget to be available at a time that isright for them. Their confidence and readinessto consider options will vary. Offering apersonal health budget shortly after a personhas been through a health crisis is unlikely tobe helpful. The framework needs to includehow and when personal health budgets willbe offered. Staff should be ready and able towork with people at the time when theperson is confident enough and ready to takemore control, and when they are willing andhave the energy to put in the work to takemore control.

A personal health budget does not have to beoffered and taken up at a single point in time,or all at once. People may wish to change onesmall part of their care first. A personal healthbudget is not an all-or-nothing offer, and it isnot obligatory. It is voluntary – people can beassured that they don’t have to choose orchange anything immediately. They may wantto take time to think about what they mightlike to be different, or to prioritise just onepart of their treatment or support. People canhave a mix of NHS services and some thingsthat they buy for themselves with theirpersonal health budget. It is also fine to keep


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everything just as it is. Many people valuetheir NHS treatment highly and want it tocontinue unchanged.

People need to be able to choose to takecontrol of a budget, and increase their takeup of responsibility, at a pace that feelscomfortable for them. They may choose notto manage the money directly, but useanother organisation or person to hold it ontheir behalf, while retaining the freedom tochoose how it is spent.

To ensure equity of access to this new way ofachieving health outcomes, there must be arange of ways available to hold and managethe money, not solely access to a directpayment. This is because many people maynot want, and some may not have capacity touse, direct payments.

How much money?

This guide starts at the point where a person has been assessed as entitled to have some ongoing health needs met by the NHS, and an indicative budget has beenallocated. It does not describe how thisprocess should happen.7,8

Many challenging issues arise whenconsidering how best to calculate appropriatebudgets that can be offered instead ofservices. For example, the NHS is currently inthe process of developing a fullerunderstanding of what services actually cost,because until recently many services werecommissioned through large block contracts.

Understanding costs and discussing them withpeople can feel unfamiliar within the NHS, andpeople can be surprised by the cost of servicesthey have been used to working in, or receivingtreatment from. Once people have thisinformation, there is growing evidence that theyare thoughtful about how to make the moneywork the best for them and seek to receive goodvalue for what is essentially public funding.Clarity from the start about what money isavailable allows for a realistic appraisal of optionsand encourages creativity and innovation.

How can the budget be spent?

People will need to know what their budgetcan be spent on and what is excluded.8

Personal health budgets cannot be used for:

n gambling

n debt repayment

n tobacco

n alcohol

n anything illegal.

Some NHS services are also excluded – people should always be able to use theseservices in addition to having a personalhealth budget. For example:

n emergency or acute services

n most primary care services such as visits to a GP.

Apart from these exclusions, personal healthbudgets can be used for any goods or servicesagreed as part of a care plan that are likely tomeet the individual’s agreed health and well-being outcomes.

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The care planning process will have involvedthe person in considering what is importantto them and what they are willing to committo, along with support and information fromthe health professional about what mighthave proved useful for others and whatresearch evidence suggests (see page 22).While some treatments are approved by theNational Institute for Health and ClinicalExcellence (NICE), there are currently manytreatments and services provided by the NHSthe efficacy of which varies person to person.

There are no treatments that are 100%reliable and 100% side effect free and thereare very few clinical situations where there isjust one course of action that should befollowed in all cases. In circumstances wherethere are a number of options leading todifferent outcomes and the right decisiondepends on a patient’s own particular set ofneeds and outcome goals, the condition issaid to be preference sensitive […] shareddecision making for these conditions shouldbe informed by the available evidence and bythe patient’s wishes, needs and preferences.9

Commissioners will need to think beyondblock commissioned services and give peoplethe opportunity to work together with theexpert professional advice and knowledge oftheir local health team. Together, they canfind creative, efficient and effective solutions,drawing also on peer knowledge andexperience. PCTs should be careful not toexclude unusual requests without examiningthe proposal on a case-by-case basis – thesemay have significant benefits for people’shealth and wellbeing.10

There is evidence that when people are givenchoice and control, it leads to better healthoutcomes. For example, in one largerandomised control trial:

The effect of giving a choice of formats for a programme of heart diseasemanagement improved physical andpsychosocial functioning.11

A personal health budget holder vividly describeshow empowering it is to be given control:

If someone else had chosen the exact thingsstated in my budget, it wouldn’t have had thesame impact on my life; it’s the fact I’vethought about and chosen for myself. I’vetaken control and purchased back, if you like,the self worth I thought I’d lost forever.

Money monitoring and review

Irrespective of how people choose to hold andmanage their budget, they will need to knowthe practical aspects of money management:

n what records to keep

n when and how the money will be monitored

n what happens if a mistake is made

n how much money may be set aside foremergencies or fluctuations in their condition

n how the budget will be reviewed if needs change

n what support is available if the person takesthe money as a direct payment

n information about the full range of third-party options available.

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The most important aspect here is the needfor trust, and proportionate light-touchmonitoring of the money. This needs to beintegrated within a simple process formonitoring and reviewing health outcomes.

See the personal health budgets toolkit: 'Howto set budgets - early learning' and ‘Budgetsetting for NHS Continuing Healthcare’.

Develop and provide information,support and training

It is important for budget holders to be ableto choose who, if anyone, they want tosupport them when writing their care plan.This is a critical role. Pilot sites6 have foundthat some people are happy and comfortableplanning on their own, particularly when theyare given clear information about what isexpected of them. But when planning for thefirst time, many people will want to talkthings through with someone else, preferablysomeone with whom they feel comfortableand who they believe has an understandingof their situation. This may be their healthcareprofessional, but some people may prefer anindependent person to guide them throughthe process and liaise with the relevantparties. As with each aspect of personalhealth budgets, the best approach is enablingchoice and not assuming one option will suiteveryone. Not everyone – including somehealth professionals – will feel comfortable inthis facilitating role. Staff may welcome someadditional training and support in facilitation.

It is important to bear in mind that people

with long-term health conditions may feelconstrained – they may find it hard to disclosewhat isn’t working for them, feel that theyought just to be grateful, and be fearful oflosing services they value. This is where peersupport can play a big part. Pilot sites havemade a range of support options available topeople, including independent brokerage.Some are also beginning to build peer supportinto their care planning process. Many peopleare willing to offer reciprocal support to oneother person. Peer support can help infundamental ways with critical elements ofthe process (see page 34).

See the Personal health budgets toolkit:‘Providing information and advice’ and‘Getting the message across’.

Agree a local approach tochoice, safeguarding and risk enablement

Choice

While personal health budgets can offercreative choice, they may also offer far more:

Personalisation recognises that the individual has a whole life and their own real wealth – that is: someone’s strengths,knowledge, resilience, community contacts,personal relationships and resources.Personalisation tries to enable services to work with the fabric of that whole life.12

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Personal health budgets can amplify theeffective use of money through combinationand integration with a person’s internal andexternal resources, for example theirmotivation and relationships. People need tofeel it is possible for useful change to happen,and hopeful that their day-to-day life can beimproved. This is necessary even when aperson has a deteriorating health condition oris nearing the end of their life. Hearing aboutreal-life examples of what others have donedifferently and talking with peers are twouseful ways to share creative thinking andgenerate new possibilities.

It will also be necessary to work with localproviders and specialist and mainstreamcommunity services to ensure people canaccess and buy what they are looking for.

Safeguarding and risk enablement

Before recent personalised care planninginitiatives in the NHS,1,2,3 the people with mostto lose if things went wrong were sometimesthe very people excluded from discussionsabout risk. Management of risk andresponsibility for safeguarding were seen as theresponsibilities of professionals. When peopleuse personal health budgets, they plan how touse their budget creatively, to tailor their careand support to improve their situation and toachieve their personal health outcomes. Part ofthat planning process must include weighingup benefits against any possible risks ofparticular aspects of their care plan.

People will want to discuss the merits ofdifferent treatment options with theirclinicians. When considering a choice of careproviders and third-party organisations, theymay also want to seek information morewidely, and to consult with other people (forexample friends they trust) and perhaps withpeople who have similar health conditions.

Some people will use their budget to continueto purchase traditional services that they findwork well for them; some will want to use it tomeet their health outcomes in different ways. Itwill not be possible simply to rely on existingregulations and protocols to manage risk, andit could be argued that the regulations werenot working well enough in the old system.NHS commissioning organisations will have todevise processes that balance protection of theperson and the organisation with the person’sright to self determination.

People already have the right to make choicesabout their care and treatment. It is neitherpossible nor helpful to try and eliminate allrisk. ‘Making shared decision making areality’9 emphasises the importance ofinvolving people in managing risk, particularly:

When it comes to clinicians trusting patients totake a course of action outside the consultingroom (taking medication for example). In thiscase, it is tempting for clinicians to tellpatients what to do in order for the clinicianto feel that they are in control of the risk (inthis case the risk of non-adherence). For manyclinicians it is counter-intuitive to supportpatients to understand and manage risk forthemselves, yet this is precisely the approachthat supports adherence.

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Part of all best practice care planning will be adiscussion about possible risks that might beincurred by the proposed use of the personalhealth budget and how those risks can beminimised to an acceptable level. Decisionswill take into account the outcomes theperson is seeking and bear in mind theirparticular circumstances, lifestyle and beliefs.

The DH and partner organisations recentlypublished papers to support the ‘No secrets’guidance,13 including materials for health servicemanagers, practitioners and NHS commissioners.This resource describes how good practicesafeguarding principles can guide health servicesto safeguard adults. However, the NHS cannotdictate to a person what care or treatment theywill receive, and risk choices are a personal issue.

Safeguarding adults is an integral part ofpatient care. Duties to safeguard patients arerequired by professional regulators and serviceregulators, and are supported in law.

Empowering approaches tosafeguarding

Duties to empower people to make decisionsand take control of their care and treatmentare underpinned by the Human Rights Act1998, the Equality Act 2010 and the MentalCapacity Act 2005.

n People have the right to make choicesabout their care and treatment, includingmaking decisions about their safety, even where those decisions may seemunwise to others.

n Empowerment means enabling a person tocontrol decisions about their care, as far asthey are able.

n Any actions that do not have a person’s fulland informed consent must have a clearjustification, be permissible in law, and bethe least restrictive of the person’s rights tomeet the justifiable outcome.

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The five principles of the Mental Capacity Act:14

n Every adult has the right to make his or her own decisions and must be assumed to havecapacity to make them unless it is proved otherwise.

n A person must be given all practicable help before anyone treats them as not being ableto make their own decisions.

n Just because an individual makes what might be seen as an unwise decision, they shouldnot be treated as lacking capacity to make that decision.

n Anything done or any decision made on behalf of a person who lacks capacity must bedone in their best interests.

n Anything done for or on behalf of a person who lacks capacity should be the leastrestrictive of their basic rights and freedoms.

The Mental Capacity Act 2005 provides astatutory framework for acting and makingdecisions on behalf of people who lackcapacity to make particular decisions forthemselves, or who have capacity and wantto make preparations for a time when theymay lack it in the future. Most people whohave a personal health budget are likely tohave capacity to make their own decisions,and to plan ahead for a time when they may lose that capacity.

See the personal health budgets toolkit:‘Choice, risk and decision-making’.

Agree the criteria for sign off

In order for a person to be able to write theircare plan and for their health team toauthorise it, a straightforward summary ofwhat it should contain must be shared withthe person. Experience suggests that a careplan should achieve the following.

n Show who the person is – their strengths,skills and personal social context as well astheir health needs. If the person lacks capacityto make their own decisions, the plan mustshow how this decision was reached andidentify who will speak on their behalf.

n Describe what is working and not workingfrom their perspective.

n Detail what is important to the person andwhat is important for their health.

n Identify and address any risks and how they will be mitigated to an acceptablelevel, including a contingency plan for

if things go wrong, and a point of contactin health services.

n State the desired health outcomes and howthey will be achieved.

n Describe in broad terms how the money willbe held and managed, and show how it willbe used to achieve the outcomes.

n Contain an action plan that details who willdo what and when.

n Include the name of the person’s care co-ordinator.

n State how and when the outcomes, andthe money, will be monitored and reviewed.This includes describing how people willknow if the plan is going well or if thingsare going wrong.

Agree the process ofauthorisation and appeals

A best practice plan has a clear threadrunning through it showing how a person’shealth needs link to an agreed set ofoutcomes, and shows how the budget will be used to meet those outcomes. It detailswho the person is and what matters most to them, as well as what matters for theirhealth and wellbeing. It describes how risk issues have been identified, discussed and addressed.

The plan may be signed off by the healthteam because they often know the personbest. Ideally, sign off is delegated to aprofessional who is as close as possible to the person, in line with the NHS principle:

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Personal health budgets must support themaking of decisions as close to the person aspossible. In this way, it is a decision made byhealth professionals who are closely involvedand know the person and their unique familyand community context.8

To support this, a risk-enablement process canbe very useful, so that no single professionalfeels they must make all the decisions alone.These processes allow health professionals,budget holders and family members to calltogether a small, consistent group of peoplefamiliar with health risk enablement toconsider a particular risk, should they wish todo so. The group agrees how the risk will bemanaged and records that learning. Over time,a log of risk-enablement strategies accumulatesthat can be both a helpful local resource and asource of national good practice (see page 13).

Funding panels may become unnecessary oncecriteria for a good plan have been made explicit,and once staff have had sufficient training andare confident and trusted to make sure thecriteria for sign off have been met. Confidence issupported when staff have a back-up risk-enablement group to call on if they wish to.

Experience has shown us that panel meetingsare not efficient. In some cases the cost of theattendance of the panel members is morethan the budget itself. Instead we have foundthat devolving responsibility to the keyworkers and the service users themselves is abetter way of delivering safe and appropriatepersonal health budgets.

- Project manager, Norfolk

The national peer network believes it isimportant for the personal health budgetholder to be present when decisions are madethat affect their life. If a plan cannot besigned off, then clear guidance for how itneeds to be amended should be given.

Appeals

It is necessary for all parties to know what willhappen if there is disagreement about signingoff a plan, and to have in place a clearprocess of appeal.

Agree how care plans will bemonitored and reviewed

In the UK, long-term conditions such asdiabetes and heart disease account for around70 percent of NHS spending. Such conditionsrequire day-to-day management to preventdeterioration and emergency hospitalisation.This task falls far more on people and theirfamilies than on health professionals.

If there are 8,760 hours in a year, the averageperson with a long term condition in the UKspends no more than three or four hours ayear with a health professional – that is less than 0.05% of the year.15

Monitoring and review processes must takeaccount of the fact that many people mustself monitor regularly and act to addresschanges in their health condition. A wellwritten support plan will include informationfrom the relevant health professionals about

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the person’s particular critical health factorsand how these must be addressed. The planwill also state what actions to take whennecessary to address a change in these criticalfactors, and who to turn to if things gobeyond a specified safe limit.

The formal review of a personal health planwill be a summary reflection of the dailymicro-review and monitoring by the personwho holds this responsibility every day. Thepurpose of the review should be clear andexplicit, and planned to make the best use ofeveryone’s time. There should be no surprises,as a person can alert their health professionaland call a review if there are any criticalincidents or crises throughout the year.Similarly, proportionate and simple budgetmonitoring will have been ongoing throughthe year, and can be summarised for review.

Department of Health regulations forhealthcare direct payments state that theremust be a care co-ordinator to:

n Manage the assessment.

n Ensure an agreed care plan.

n Manage the review and monitoring processand liaise between the NHS commissioningorganisation and the person receiving thedirect payment.

If a person does not receive their budget as adirect payment, having a named point ofcontact to carry out each of these functions isequally valid and necessary.

See the personal health budgets toolkit:‘Measuring the results’.

Gather and learn from feedback

It will be helpful to use the individual reviewprocess to collect information and ongoingfeedback on the use of personal healthbudgets. This should capture what is working,and not working, in terms of outcomes,money and the process as a whole.Aggregating the information gatheredthrough each individual review will providevital information for strategic planning anddeveloping better local services.

Every decision made in a personal careplanning conversation is also in effect a microcommissioning decision. Capturing thisinformation and aggregating it can inform themacro commissioning strategy.9

See the personal health budgets toolkit:‘Developing the market’.

Develop a local communicationstrategy and workforcedevelopment plan

Once a group has worked together to createthe central elements of the local frameworkfor personal health budgets, it will need toconsider carefully how best to communicatethis. Information should be made available ina range of formats.

See the personal health budgets toolkit:‘Providing information and advice’ and‘Getting the message across’.

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At the heart of a personal health budget is a care plan developed inpartnership between a person and their health professionals.

A care plan is a record of the discussions andagreements between the person and theirhealth team. For people using a personalhealth budget, it will include their healthneeds, the outcomes they want to achieve,how they intend to use their budget to dothis, and the name of the care co-ordinatorresponsible for managing the care plan.

This section outlines how developing a care planfits within the steps of the personal healthbudgets process shown in the diagram below.

Other publications in the personal healthbudgets toolkit give more information aboutthe six steps, including steps 3 and 5:

‘Integrating personal budgets – early learning’

‘Options for managing a personal health budget’.

‘How to set budgets – early learning from thepersonal health budget pilot’ and ‘Budgetsetting for NHS Continuing Healthcare’

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3 The individual care planning process

MAKING

CONTACT AND

GETTING CLEAR

INFORMATION

UNDERSTANDING

THE PERSON’S

HEALTH AND

WELLBEING

NEEDS

WORKING OUT

THE AMOUNT

OF MONEY

AVAILABLE

MAKING A

CARE PLAN

ORGANISING

CARE AND

SUPPORT

MONITORING

AND REVIEW

The steps of the personal health budgets process

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Before starting to plan, people will need clear,accessible information about what a personalhealth budget is, its purpose and how it willwork for them (how much money is in theirpersonal health budget; the choice of ways tohold the money; the choice and range ofsupport for planning; what could be possible).Capacity issues will also need to be addressedin the initial stages of the process.

This is a lot of information for people to take in, and this first stage needs to be

given sufficient time. Staff should explorepeople’s understanding and allow space for questions and clarification. Sending aleaflet or directing people to a website isunlikely to be sufficient, although this may be a helpful part of a broader approach.Linking people with others who have apersonal health budget already in place canbe particularly helpful, both in person andvia virtual links and forums (egwww.peoplehub.org.uk).

Making contact and getting clear information

http://www.peoplehub.org.uk

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Understanding the person's health and wellbeing needs

What is working and not working?

The opening conversation should seek to builda trusting relationship and allow people spacein which to consider what is working and notworking in their life, related to their health.People may need to explore this with peers, tobegin to move from a passive acceptance ofeverything remaining the way it is, to a realisationthat things could change. For example, if a parentcarer has never been able to go out for the daywith their child because the shift of agency staff

ends every day at 2 pm, they may not appreciatethat by using a personal health budget toorganise the shift times differently, they couldenable their child to have the same opportunitiesas other children and to live a more flexible life.

For people with long-term health conditions,their health needs tend to be woven into everyaspect of their life. This part of the planningprocess gradually starts to build a picture notonly of health needs, but of who the person isand how they want to shape their life by

21


making the decisions about their health andwellbeing that matter most to them.

Previously, the vital question of how a person would like to live their life was neverasked. There was little planning around theperson and often the debate would bearound generic symptom management, andtoo often on the professional assumption that any other way would be too costly, too risky or too onerous.

- Personal health budgets peer networkmember, 2012

The point at which a health professional’sviews are incorporated into the planningprocess is very important. The healthprofessional’s view is not put in at the verybeginning, or at the very end. There needs to be space first for exploratory discussion,active listening and respectful questioning and reflection, in order to find out the mostimportant things that are working and notworking from the person’s perspective.

What is important to me and for my health?

It is vital to consider together what isimportant to the person in terms of:

n What matters most to them, and

n What matters for their health.

The person in question is the only one who canknow what matters to them, and they will also(unless newly diagnosed) have a good idea ofwhat is important for their health. Theprofessional can then add their expertise. Inthinking together about what is important to,and for, a person, health professionals canhelpfully contribute their expert knowledgeabout the specific “important for” information.For example, the person may be aware thatthey need to keep their blood sugar or oxygensaturation at a certain level, and theprofessional can give specific advice about howto monitor and maintain the correct level fortheir particular illness, age and context. Healthprofessionals play a vital part in helping peopleexplore difficult issues around loss andadjustment to a different life after accidents orstrokes, or following a life-limiting diagnosis.

So it is at this point where the healthprofessional can most usefully begin to

input their knowledge, ideas and expertise.

One thing that some of our patients have toldus was really helpful was to advise them tohave the questions in the toolkit (personalhealth budgets information eg What isimportant to you and for you?, What isworking well, what isn’t working well?) outon the side so that they could jot things downas they discussed them with family, friendsand different health professionals. Thispreparation helped them to write the plan butalso to think of ideas for meeting outcomesthat maybe they wouldn’t have thoughtabout on their own.

- Project manager, Northamptonshire

The best planning process will lead to a planthat integrates what matters most tosomeone with what matters most for theirhealth. This joining together of best clinicalpractice with a person’s own motivations andcreativity leads to plans that are:

n Acted on and not ignored.

n A live, participatory process, not a prescription.

n Making best use of both professional andindividual knowledge and ideas.

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23


Making a care plan

Priorities and outcomes

All the priorities and outcomes that flow from the above must be the person’s ownoutcomes. It is important not to add on“‘professionals’ health outcomes” at the end, in the same way as they should not be imposed at the beginning.

Individual goals need to feel important to thepatient – action planning may feeluncomfortable to the clinician where the

patient is not willing to agree to somethingwhich the clinician sees as important.Engaging with the process is essential to findout what the patient is prepared to do.

Patients and clinicians have similar aims toimprove long term outcomes by increasinglength of life and reducing morbidity – also inshort term improving quality of life; but theyoften prioritise differently, with cliniciansemphasising the former and people with longterm conditions the latter.

Accepting a person’s quality of life and theirknowledge, skills and confidence to managetheir own health and healthcare are importantoutcomes in their own right, poses newer andharder challenges.4

If the outcomes are not recognised andowned by the person, then it isn’t their planand something has gone wrong with theconversation, so there needs to be furtherdialogue. The prioritising discussion will pulltogether, from the conversation, the jointpriorities agreed between the person and thehealth professional. There will have been adiscussion about options, and a clarification oftop priorities for action, including risk andcontingency planning.

When developing outcomes, care needs to betaken against thinking of services andtherapies too soon. Outcomes are notservices, treatments or therapy. Outcomes arechanges in, or sustaining of, physicalbehaviours or mental states or emotions. Thecare plan needs to describe clearly what isbeing aimed for, and in specific terms whatwill be working better, be maintained or beavoided. This can include what is hoped foreven in a deteriorating health condition, or atthe end of life.

The health outcomes need to come from theperson. The health professional’s role is tohelp support the identification of the person’sown outcomes and to contribute to makingthem as specific and individually relevant as

possible. The actions that follow are then fullyand clearly linked to the specific outcomes.

Risk enablement

At this point any risks should be identifiedand addressed. When planning with apersonal health budget, risk and responsibilityare openly discussed and can be shared. If aperson wishes to have more power andcontrol, there is an expectation that they willbegin to share more responsibility formanaging their health condition.

Everyone has different views on how muchrisk and responsibility they may want to takeat different times, and there should never beany compulsion to do things differently.Personal health budgets can be used for all,some or none of a person’s treatment,depending on what that person wants andfeels capable of taking on. If a person isfeeling vulnerable, scared and unwell, theymay prefer a health professional to determinewhat is in their best interest.

But over time, when they may feel moreconfident, or if they feel that something vitalto them is at risk of being lost or neverachieved, they may want to take more controland responsibility, and they may view riskdifferently. A more open, trusting andrespectful dialogue can lead to better qualitydecision making and better outcomes, as theperson commits to carrying out the personalplan they have written.

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There are also workforce development andcultural issues to be addressed:

Research in the UK suggests clinicians maytake a compliance approach to selfmanagement and this is unlikely to be helpful.The most promising way of supporting selfmanagement appears to involve approachesthat empower and activate people so theyfeel more confident about managing theirconditions and are more likely to alter theirbehaviours. There is strong evidencesuggesting that improved self efficacy isassociated with better clinical outcomes.

Whilst evidence is emerging, there is still a longway to go before we understand the educationsupport necessary to optimise clinicians’attitudes, skills and behaviours towards selfmanagement. This also calls for a fundamentalshift of power dynamics and the way bothpatients and professionals view their roles.5

Finding personalised ways of managing risk

When developing the care planning process, itis helpful for both people with budgets andclinicians, commissioners and service providersto work together on how this part of the careplan will be discussed, agreed and recorded. Itcan be helpful to have a separate sheet in thecare plan that is used to address the issues ofrisk, where the person and anyone supportingthem can record what might go wrong withthe plan and how they plan to minimise thelikelihood of this happening.

On this sheet, it can be helpful to have asimple checklist of prompts such as:

n Is there is anything the person or theirclinician is worried about?

n Is there anything that has happened in thepast that might arise again?

n Is there a possibility of harm or abuse?

n Is there adequate support in place if personwishes to use direct payments to employtheir own personal assistant?

The King’s Fund publication ‘Making shareddecision making a reality’ argues that there shouldbe a formal process for documenting the:

n decision

n agreed course of action

n ongoing roles and responsibility of each party

n risk-sharing agreement.

While all of the above is usually formalised inthe process of consenting to a medical orsurgical intervention, healthcare providersshould ensure that they have documentationsystems and processes in place when therehas been a shared decision about any courseof action, such as adhering to a medicationregime or undertaking a lifestyle or behaviourchange. As well as providing a useful recordfor patients and other professionals they mayencounter during their care, this practicecould provide protection from legal challengeif clinicians can demonstrate that patientswere offered choices and provided withreliable information about the options.9

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Action planning

The action planning section of the care planmust specify clearly who will do what andwhen. It should show who is takingresponsibility for each task and how they willdo it. For example:

Clinician will input particular therapies atfrequency agreed, person will purchaseequipment and has access to the information ofwhere to get this, and commissioner will checkif preferred agency is appropriately registered.

If someone is planning to employ their ownpersonal assistants to undertake specifichealth tasks, the plan will state how relevanttraining will be provided and the process forcompetency to be signed off.

The ideas about actions to take in order toachieve outcomes will draw together theperson’s own solutions, which they arecommitted and motivated to do, with thehealth professional’s expertise about whatmight have proved useful for others and whatresearch evidence suggests.

26


27


The actions in the plan should be specific andlinked to the outcomes. There must also beclear identification of likely risks and ways toaddress them (see page 13).

Professionals need to trust people’s ownsolutions. This is at the heart of the shift in therelationship – people exploring what matters tothem and finding their own ways to participateactively in achieving their outcomes.

Effective action planning will produce a set ofspecific tasks, which form the person’s explicitplan for meeting their health outcomes. Theseshould be integrated with the other importantparts of their day-to-day living. Personalownership and control, together with therecognition of health as interwoven into aperson’s whole life, makes the plan effective.

Sign off

Since the process of developing a care plan isan ongoing dialogue between a person andtheir health team, the plan can often besigned off by the same people who have beenpart of its development. After family andfriends, the health team are often the peoplewho know the family best.

For sign-off processes to be simple andsustainable, criteria for a good plan need tohave been made explicit, and staff need to

have sufficient training and feel confident andtrusted to ensure the criteria for sign off havebeen met. Plans may be written in manydifferent styles, but they must include themain criteria agreed in the local framework(see page 15).

Personal health budgets must support themaking of decisions as close to the person aspossible. In this way, it is a decision made byhealth professionals who are closely involvedand know the person and their unique familyand community context.8

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Monitoring and review

29


Alongside training and good working knowledgeof the criteria, risk-enablement processes canbe helpful (see page 13).

The frequency of reviews should be sensitive toeach person’s unique situation and health condition.

People with personal health budgets will needto be fully aware that they do not have towait for a scheduled review if theircircumstances or health condition havesignificantly changed, but can call for a review as necessary (see page 16).

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Personal health budgets can betransformative, efficient and effective.Their quality and effectiveness can beevaluated locally, in an ongoing way, by putting in place simple feedbackmechanisms to assess their impact from the perspective of budget holders,health professionals, providerorganisations and commissioners.

It is helpful to see a personal health budget asone useful tool or mechanism, which on itsown is not sufficient to achieve useful change.The budget is, however, an important lever tosupport the changing relationship betweenpeople and professionals and to enableeffective planning and innovation.

The local framework contains the elementsessential to care planning for personal healthbudgets. And the care planning process itselfis at the heart of the shift in power, to ensurethat people with long-term health conditionsand disabilities have the chance to shape theirlives by making the decisions about their healthand wellbeing that matter most to them.

The personal health budgets planning processencourages blue-sky creative thinking, and isnot constrained by existing services. It seeksto find the right way forward for each person.If carried out successfully, and supported at anearly stage with an indicative budget, this canbe a therapeutic and enlightening process.

We all know that planning alone can be anisolating and frustrating process, but whendone collaboratively, exciting solutions canemerge that make a real difference topeople’s lives.

Having a personal health budget allowspeople to have a real say in how their futureshould look. It allows them to work withpeople they trust to deliver their supportwhen they need it and how they need it. Itallows personal assistants to develop skillsthat are directly relevant to the person’sneeds. It allows for flexibility and is adaptableto changing situations. It allows people tomove from a world where others know bestto one where their input is valued above allothers but not in isolation from others.

- Personal health budgets peer network member

4 Conclusion

1 NHS Diabetes. Year of care. 2012www.diabetes.nhs.uk

2 NHS Right Care. Shared decision making.2012 www.rightcare.nhs.uk

3 NHS Choices. NSF for long termconditions. 2011 www.nhs.uk

4 Gerada, C. Care planning – improvingthe lives of people with long termconditions. Royal College of GeneralPractitioners. 2011 www.rcgp.org.uk

5 Health Foundation. Helping people help themselves. 2011 www.health.org.uk

6 Personal Health Budgets Learning Network.About the pilot programme. 2009www.personalhealthbudgets.dh.gov.uk

7 Department of Health. Budget setting forNHS Continuing Healthcare. 2012www.personalhealthbudgets.dh.gov.uk

8 Department of Health. Personal healthbudgets: first steps. 2010 www.dh.gov.uk

9 Coulter, A. and Collins, A. Making shareddecision making a reality. The King’sFund. 2011 www.kingsfund.org.uk

10 Department of Health. Direct payments forhealthcare: information for pilot sites. 2010www.dh.gov.uk

11 Clark, N., Janz, N., Dodge, J., Mosca, L.,Lin, X., Long, Q., et al. The effect ofpatient choice of intervention onhealth outcomes. ContemporaryClinical Trials. 2008. 29(5): 679e86

12 Alakeson, V. and Duffy, S. Healthefficiencies – the possible impact of personalisation in healthcare.Centre for Welfare Reform. 2011www.centreforwelfarereform.org

13 Department of Health. Safeguardingadults: the role of health servicepractitioners. 2011 www.dh.gov.uk

14 The Mental Capacity Act 2005www.justice.gov.uk

15 Hannan, A. quoted in Alakeson, V. Active patient: the case for self-direction in healthcare. Centre for Welfare Reform. 2010www.personalhealthbudgets.dh.gov.uk

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5 References

http://www.diabetes.nhs.uk

http://www.rightcare.nhs.uk

http://www.nhs.uk

http://www.rcgp.org.uk

http://www.health.org.uk

http://www.personalhealthbudgets.dh.gov.uk


http://www.dh.gov.uk

http://www.kingsfund.org.uk


http://www.centreforwelfarereform.org


http://www.justice.gov.uk


http://www.diabetes.nhs.uk/year_of_care/

http://www.rightcare.nhs.uk/index.php/shared-decision making/

http://www.nhs.uk/NHSEngland/NSF/Pages/Longtermconditions.aspx

http://www.health.org.uk/publications/evidence-helping-people-help-themselves/

http://www.personalhealthbudgets.dh.gov.uk/About/aboutPilots

http://www.dh.gov.uk/en/DH_124882

http://www.justice.gov.uk/protecting-the-vulnerable/mental-capacity-act

http://www.birmingham.ac.uk/Documents/college-social-sciences/social-policy/HSMC/publications/active-patient-paper.pdf

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Pilot sites found it helpful to have considereda range of questions before offeringpersonal health budgets to people.

“Knowing the deal” includes some pivotalissues, and it is critical to have at least workabletentative answers before offering peoplepersonal health budgets, even if they can’t allbe fully resolved before starting the process.

Pilot sites6 were asked to convene a meetingwith roughly equal representation frompeople interested in, or using, personal healthbudgets, clinicians, commissioners and financestaff. For each of the five sets of questionsbelow, they considered their local answers tothese three questions:

n Is there a shared and commonly agreed answer? or

n Do people have a variety of views? or

n Have we not yet developed an answer forsome of these questions?

What is this all about?

n How do I find out about personal health budgets?

n Where did this idea come from?

n Is it about saving the government money?

n Is it about privatising the NHS?

n What is a personal health budget – is there a definition?

n What are they for?

n What is the purpose of them?

n Is it about just more choice, or is it about changing the relationship betweenpeople and the NHS?

n When is a personal health budget offered to me?

n Is it only offered once, and can I change my mind?

n Do I have to have one?

n Can I keep things how they are?

Appendix 1

Developing the local approach –questions to consider

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What are the rules around the money?

n What can the money be spent on?

n What can it not be spent on?

n How is the amount of money I can havecontrol of worked out, and for how long isthis put in place?

n When do you tell me how much money isavailable to plan with?

n Can I have help with holding and managingthe money?

n Can everyone have the money given directlyto them, and if not, how else can I still havecontrol of the decisions while someone elseholds the money on my behalf?

n What do you expect of me in terms ofkeeping records?

n What can I expect of you in terms of flexibilityin using the money, and keeping the processessimple and trusting me to use the money well?

n Is it paid monthly or yearly?

n Can I save some for contingencies oremergencies, or do I have to pay backanything underspent each month?

n What happens if I spent too much, or too little?

n What happens if I make a mistake?

n What if my needs change – is there anopportunity to have more money if Ibecome more unwell, or does it stay thesame for the year?

n Do I have to cash in every part of my health-funded care, or can I choose to control justthe things that matter most to me?

n Can I have a mix of NHS services and somethings that I buy for myself?

What about how to create my plan?

n What are the local criteria for agreeing anycare plan – and can I see these so I canwrite my own plan?

n Who explains what a care plan is for andwhat needs to be included in it?

n Do I need separate plans for social care andhealth money?

n Is there a booklet or guide I can read to tellme about what I have to do?

n Can I talk with someone else who’s donethis before?

n Are there any examples of what others have done?

n Who can help me with this plan?

n Does it have to fit into a predesigned form?

n What is an outcome?

n How do I keep myself safe?

n If I want to employ staff, what help can Ihave with that?

n How will we agree the skills andcompetencies needed for any staff andwhat training they should have?

34


n Who will support my staff, agree rotas, andmanage payroll, sick pay and holiday cover?

n Can I have help to find the things and thekind of people I want?

n How much control will I have?

How is the care plan agreed?

n Who authorises or agrees the plan, whereare the decisions made, and if it has notbeen agreed, do they have to tell me why?

n How long do I have to wait to know if myplan has been agreed?

n Can I keep my own copy?

n How can I let you know my wishes if I can’texpress myself easily?

n What if I’m not able to make decisions formyself – who will speak for me?

n Where does the buck stop – whoseresponsibility is all of this – mine, yours or ours?

n Is it now always about me knowing best, oris this a shared agreement between expertprofessionals and myself?

n If we can’t agree, who makes the final decision?

How is the care plan reviewed?

n How will we know if it’s working well?

n What happens if what I planned doesn’twork out, and who can I call if I’m worried?

n Is it OK to try some things and fail?

n How often will reviews happen, and whocan request one?

n Whose perspectives are considered? (mine, health professionals’, family carers’,social care professionals‘, commissioners’,finance staff’s?)

n Will we focus on whether the outcomeshave been achieved, or on what has been bought?

n Will there be a separate process forreviewing the money, or will we have oneprocess to consider both money andoutcomes together?

n Are local people involved in developing thelocal care planning process alongside healthprofessionals and commissioners fromhealth and social care?

35


Experience shows that peer support can help in the following ways.

n Help people begin to feel hopeful andbegin to see that some things could change for the better, even in the mostchallenging situations.

n Encourage people to say what’s notworking well, and so consider prioritiesfor change.

n Let people hear ideas about possiblealternative ways of achieving healthoutcomes. For example, how can a personchoose red or green if the only colour they have ever seen is blue? How can theyknow there are other ways to meet people,learn and have fun outside a segregatedday care centre?

n Allow people to learn from others’ directexperience.

n Enable people to plan at a pace that feelscomfortable to them.

n Support people to decide how they want tohave the money held and managed afterthey have thought about everything theywant the plan to achieve. People shouldn’tbe rushed into choosing a direct payment,or any other option, until they’veunderstood what it means.

n If a person chooses a third party to hold the money, peer support can help them to consider what to beware of and to look for in a third-party organisation, so they can retain the amount of controlthat they want.

Appendix 2

How peer support can help

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Merseyside mental healthpersonal health budgets pilot,Recovery Enablement Panel:draft terms of reference

It is anticipated that the large majority, if not all, cases involving personal healthbudgets will be agreed and implemented atthe multidisciplinary assessment and careplanning stages of the care programmeapproach and that referral to the RecoveryEnablement Panel will be exceptional.

Introduction

Members of the Merseyside Mental HealthPilot (NHS Sefton, NHS Knowsley, LiverpoolPCT and Mersey Care NHS Trust) recognisethat risk can be a consequence of peopletaking decisions about their lives. These termsof reference describe the arrangements thatthe Merseyside personal health budget pilothas put in place to manage what are deemedto be high-risk or complex situations and tosupport people on the road to recovery.

To make good choices, we all need to understandthe consequences of the decisions we makeand to take proportionate responsibility forthem. The Merseyside personal health budgetpilot aims to promote a culture of choice thatentails responsible, reasonable, supported andshared decision making.

Reasonable risk means striking a balancebetween empowering people to make choiceswhile still supporting them to take informedeveryday risks. The Recovery EnablementPanel will share decision making in situationsconsidered to be of higher risk, with the aimof mitigating the risk in an effective, transparentand safe way, based on the informationavailable. The Recovery Enablement Panel willprovide a forum to consider identified risksand mitigating actions in the small minority ofcases where these cannot be satisfactorilyresolved during the normal processes ofmultidisciplinary assessment, support careplanning or review as supported by the careprogramme approach. Risks can be physical or emotional, by or to the service user orothers, linked to the capacity or capability ofpeople or organisations, reputational and/orlinked to service cost or type.

Appendix 3

Risk enablement example

37


Purpose

The purpose of the Recovery EnablementPanel is as follows.

n To guide, advise and support staff, serviceusers and their carers to ensure that riskswith potentially high repercussions aremanaged and minimised to protect staff,service users and the organisations involved.The Panel has been designed to be a safeand supportive environment for both theperson and staff.

n To ensure a consistent and enabling approachto managing risk decision making, wherethe risk to independence is balanced withthe risk of not supporting choice.

n To seek positive solutions and outcomes forpeople and resolve issues relating to thesharing of risk between people , thirdparties and the NHS organisations.

n To ensure that no person is left to make a difficult decision without support and that NHS organisations involved in the pilot can demonstrate they have fulfilledtheir duty of care in the support of serviceusers and staff.

n To provide a forum where staff at differentlevels in the organisations and service userscan share risk decision making where thereis raised concern over levels of risk.

n To take the final decisions on issuesinvolving risk or complex issues whichmember of staff, service users or othersrefer to the Panel.

n To promote a consistent approach tomanaging complex risk decision making.

Scope of Responsibility

It is anticipated that the large majority, if notall, cases involving personal health budgetswill be agreed and implemented at themultidisciplinary assessment and care planningstages of the care programme approach, andthat referral to the Recovery EnablementPanel will be exceptional.

The Panel will act as decision maker for casesreferred. It will explore, with the cliniciansinvolved in the case, how the risk may bemitigated and managed to promote recoveryand advise the clinicians accordingly.

Decisions to proceed with support packages,based on the guidance of the Panel, can besanctioned only by unanimous agreement ofthe Panel.

It is the responsibility of the care team andmanagement to implement the decisions of the Panel.

The Recovery Enablement Panel will liaise with the personal health budget steeringgroup and the relevant NHS organisationregarding any issues arising from themanagement of complex risk cases.

The Recovery Enablement Panel will notconsider complaints arising from the refusal ofPrimary Care Trusts or Mersey Care to fundcases found not to meet the relevant eligibilitycriteria for funding or service provision.

Each NHS organisation has separate proceduresfor dealing with such complaints. The RecoveryEnablement Panel will not replace orsubstitute existing processes and procedures

38


such as safeguarding and complaints where it is more appropriate to use these.

Referrals to the Recovery Enablement Panel

Referrals to the Recovery Enablement Panelshould be made to the steering grouprepresentative of the relevant Primary CareTrust (Panel Convenor) a minimum of sevenworking days before a decision is required.

Referrals may be made, in writing, by the serviceuser, carer, clinician, Primary Care Trust PanelManager, broker, peer support worker, projectmanager and members of the steering and projectgroups. The Recovery Enablement Panel willconsider referrals on the grounds of risk directlyrelated to the use of a personal health budget:

n Physical or emotional risk.

n Anticipated risk to or by others.

n Political or reputational risk to the NHSorganisations or partners.

n Financial or budgetary risk that cannot beaddressed through existing NHS processes.

n Legal or regulatory issues.

The Recovery Enablement Panel may refer toother organisational processes or seek advicewhere this is considered appropriate.

Suitability criteria

The Recovery Enablement Panel willdetermine a service’s suitability by ensuringthat the proposed intervention fulfils thefollowing criteria.

n The proposed service will help work towardsspecific longer-term outcomes identified inthe service user’s care plan and specificallythe service user’s agreed outcomes.

n The proposed service represents a reasonablebalance between risk and empowerment.

n The service user is realistically likely toengage with the service.

n The proposed service is legal.

n The proposed service is directly or indirectlyrelated to the service user’s core condition.

n The proposed service has been chosenfollowing consultation with family and/orcarers where appropriate.

n The proposed service will not pose a majorrisk to the PCT or Trust (eg adversepublicity, legal action).

Membership

The Recovery Enablement Panel will comprise a minimum five from the following:

n Team manager (chairperson).

n Care co-ordinator (from a different team).

n Primary Care Trust representative.

n Mersey Care representative.

n Project manager.

n Clinician responsible for the support package.

n One or two independent service users (one could be a supporter of the other).

n The service user (or representative).

n Finance representative of the relevantPrimary Care Trust.

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The Panel may invite relevant others (Primary Care Trust Panel Manager,communications lead, broker) to join the Panel as appropriate.

Where a Panel member cannot attend, they may nominate an appropriate deputyor submit written comments.

A quorum will be five members. This mustinclude the team manager, the clinicianresponsible for the support package, and the PCT and/or Mersey Care representative as appropriate.

Frequency and format of meetings

Each Panel will have a designated chairpersonto ensure accountability, continuity andcommitment. The chairperson will normally bethe team manager of the accountable team.

Panels will meet as appropriate to the needsof the personal health budgets pilot. There isno set frequency for meetings; they will beconvened as the need arises.

All paperwork should be with the Panel convenorat least seven days before a decision is required.

Panel meetings should be well documentedand decisions accurately recorded to clarifyoutcomes and allow actions to be demonstrated.

The Panel may set review dates to satisfy itself of the continuing efficacy of the agreed care plan.

Gateway Ref No. 17753

Personal health budgets team

Websites: www.personalhealthbudgets.dh.gov.uk/toolkitwww.nhs.uk/personalhealthbudgets

Email: [email protected]

Department of Health customer service centre: 020 7210 4850

http://www.personalhealthbudgets.dh.gov.uk/toolkit

http://www.nhs.uk/personalhealthbudgets

mailto:[email protected]