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PERSONAL HEALTH BUDGETS GUIDE

Third party budgets: the families’ perspective

Authors: This guide was written for the Department of Health by a team led by Jo Fitzgerald. Jo is co-founder of community interest company peoplehub, and is lead for the national personalhealth budgets peer network, a group of people with personal health budgets or their families, which has been working with the Department of Health during the pilot. Other members of the team are Rita Brewis, Linnet Macintyre and Colin Royle, co-founders of peoplehub, and independentconsultant Andrew Tyson.

The authors thank the families involved, Crossroads Ribble Valley and Solo Support Services Ltd.


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1 Introduction 3

2 How third party budgets work 5

3 Themes important to families 6

4 Making third party budgets work well 18

5 Recommendations from families 24

6 References 25

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 health care 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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This guide is about what works forfamilies who receive a personal healthbudget and use a third party organisationto manage it. It is written by people withdirect experience of personal healthbudgets. It is based on interviews withfamily members, a third partyorganisation and an NHS commissioner.The guide will be of interest to peoplewho are eligible for a personal healthbudget and their families, and thoseworking in the NHS who areimplementing personal health budgets.

This guide describes how third party budgetshave been helpful to people who found thattraditional services don’t work well. It describeshow these arrangements work in practice.

The diagram below shows the three optionsfor how a personal health budget can bemanaged. A third party budget provides analternative in cases where a person or theirfamily do not want a direct payment forhealth care or a notional budget (where theNHS holds the money and buys or providesthe goods or services the person has chosen).1

1 Introduction

CARE PLAN

At the heart of a personal health budget is a care plan, developed by an individual in partnership with their health care professional.

Notional budget:money held by NHS

Third party budget:money paid to an

organisation that holds iton the person's behalf

Direct payment for health care:*

money paid to the personor their representative

*IN APPROVED AREAS OF ENGLAND

With such an arrangement, an organisationlegally independent of both the person and the NHS holds the money on the person’s behalf.

The organisation is referred to as a third partybecause the budget is held neither by theNHS commissioner nor the family. A thirdparty organisation could be an independentuser trust (a limited company providing aservice to budget holders), or an existingvoluntary organisation, user-led organisationor community interest company. An individualservice fund is a way to operate a third partybudget that is beginning to become morewidely available for people who have apersonal budget for social care.2,3

Families interviewed for this guide were thoseseeking positive change for a family membereither receiving or expecting to receive NHSContinuing Healthcare. Each family has atleast one member (in most cases, the motherof the person with the identified healthneeds) who has pursued their vision of abetter life with a degree of relentlessness.They were driven by the belief that a personalhealth budget was the only option that couldmitigate their feelings of powerlessness,frustration and fear for the future.

Some families had experienced the benefits ofa social care personal budget. They werefacing the loss of choice and control that isoften experienced when making the transitionto NHS Continuing Healthcare, where servicesare traditionally commissioned from a nursingagency. Others were deeply unhappy with thesupport services they received because theyhad little choice or control over how thesupport was delivered.

Some families receive support or nursingservices for up to 24 hours a day. The loss ofprivacy has a great impact on family life –caring is transformed into a public activity.The families reported feeling scrutinised bypeople who had little understanding of theirsituation. They were frustrated by the highturnover of agency staff and the lack ofcontrol over who came into their home. Theystruggled to be heard and felt disempowered.

As few families currently have a personalhealth budget, and there are also few thirdparty organisations providing support, wehope the findings in this guide will encouragefurther developments in this area. The familiesand organisations interviewed have learned ahuge amount about what works and whatdoesn’t, and are eager to share their learningfor the benefit of others.

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Third party budgets are uncommon. Eachfamily we spoke with had created thearrangement with a third partyorganisation because it was the only waythey could gain real choice and controlover the health care of their familymember. The families have been able todo this through a highly developed senseof what they want and need in order tosurvive and prosper, and of what thesystem will permit at this time, togetherwith a significant degree of peer support.

The families we interviewed had madearrangements that worked in slightly differentways, but with a common sequence.

n A health need is identified which the NHS isrequired to meet. In most cases, the needmeets the criteria for NHS ContinuingHealthcare funding.

n The standard arrangement for delivery ofhealth care by local community services isnot suitable for the family, for one reasonor another.

n The family is attracted by the alternativeoption of a personal health budget. Theydon’t want a direct payment for health care or don’t live in a pilot area.4

n Some families already have experience of directpayments for social care. Their family memberbecomes eligible for NHS ContinuingHealthcare funding and is no longer able touse a direct payment. As they are unwilling to

give up their autonomy and independence,their only option is to use a third party budget.

n The family researches options. By goodfortune, they manage to connect withsomeone who has a personal health budgetand is willing to offer peer support. Throughthis, they learn that a direct payment is notthe only management option, and that theymay be able to get support from a suitableorganisation registered with the Care QualityCommission, which will enter into acontractual arrangement with the NHS.

n The family then seek out an organisation to provide the support they need. At thispoint, the stories of the families divergesomewhat: some identify a localorganisation; in other cases they find anorganisation based elsewhere in the countrythat is willing to work in their area; in onecase, the arrangements with the firstorganisation identified prove unsatisfactoryand the family seek out an alternative. NHScommissioners are involved at this stage,but are not the prime movers.

n Precisely what the organisation offers thefamily varies depending on need. Thefundamental arrangement is that the NHScontracts with the organisation to deliver anagreed package of health care support,managing the personal health budget andemploying the staff this requires. Inpractice, the role of the family is central tothe ongoing service.

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2 How third party budgets work

Each family has its own story to tell, with unique perspectives and experiences.A number of themes were common tomost. This section describes the mostimportant themes, illustrated with quotesfrom interviews with the families.

The need to control your own destiny

One of the most consistent messages fromfamilies with a member who has serioushealth problems and needs a lot of professionalcare is their sense of powerlessness. Peopleoften feel their fate is in other people’s handsand that they are powerless to make crucialdecisions, so they worry about the future,they sleep badly and their mental and physicalhealth is compromised. This was a universalfeature of all the families we met before theyreceived their personal health budget. Thissense of powerlessness is illustrated by onefamily member:

Everything was the wrong way round. Peoplewho controlled things for us were remote fromus. They were coming into our house, andthey didn’t know us. Decisions were made toserve the needs of the staff, what worked forthem, not for us. Some of the decisions wereabout actively disempowering us.

Another said:

Being dependent on services sucks yourenergy. Some of the nights I go to bed feeling most exhausted are not attributable to looking after C, because although this isreally full on, it’s something I do all the timeand gradually adjusted to over the years. But the feelings of frustration/anger brought about by other people’s lack ofunderstanding or caring of my situation really wear me out. I’ve never felt sopowerless and out of control of so manyaspects of my life.

What families say is important here. Is carebeing provided by someone who really knows and cares about the person who hasthe health need, knowing them as a person,not just a bundle of needs? It is difficult, andcertainly takes a long time, for an outsider toget to know a person with very high supportneeds in this way. And in traditional services, it is not expected that a professional personshould get to know the person to this degree.This is a core part of the problem that all the families identified.

The sense of helplessness among familymembers extends beyond this: it is oftenmagnified by deep anxieties for the safety of the person with health needs.


3 Themes important to families

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One mother said:

It takes a very long time to get to knowwhat’s “normal” for A (her daughter).Although other people have knowledge ofdrugs and therapies or clinical matters, I don’tbelieve they can keep A safe without mebeing part of the jigsaw.

Families often become competent to performhigh-tech procedures that are normally thepreserve of qualified nurses. The families wespoke to expressed confidence in their expertiseand explained that specialist knowledge andexperiential learning was a fundamental aspectof caring for their family member. They believethat becoming an expert in every aspect of aperson’s health needs is crucial to ensuring theirsafety and wellbeing. One mum said:

Over time, it became obvious that myhusband and I knew more about our son andhis ventilator than anyone else. This wasshocking at first, but we soon realised that wewere indeed the experts!

In this context, becoming an expert doesn’tmean emulating doctors; it reflects people’sinsightful grasp of medical and intuitiveknowledge when they have cared for aperson over many months or years. It meansvaluing and understanding their uniqueperspective and ability to understandinstinctively what is needed by the personthey care for. It necessitates the highest levelof vigilance and the utmost trust in one’sinstincts, which can be difficult to surrenderto other people’s control. Families understandthat knowing the person very well, thinking

outside the box and relying on a sixth sensecan be crucial when caring for a person withcomplex health needs. C’s mum knows she isthe only one:

who understands medicine as applied to C.The doctors are helpful in sharing the theory,but they don’t know C’s peculiarities.

For the families we interviewed, this sense ofless than full engagement with traditionalservices, compounded by worries about healthand safety, creates overwhelming feelings ofexclusion and powerlessness. All the people wespoke with were inspired to seek outinformation about personal health budgetsbecause of their wish to change this situation, totake control of their own destiny and to recovera sense of autonomy. One person said heregarded himself as quite a laid-back person, butcame to see the need to exercise more controlwhen his father became ill and he saw thingswere not being done as the family wanted. Allthe people we interviewed shared the view thatthey would be more able to achieve the wished-for control and quality of care through use of apersonal health budget, rather than throughcontinuing to rely on directly provided services.

The people we interviewed knew about directpayments and would have chosen that optionif it was available. But as they explored thealternatives, they could see great advantagesin getting help from a specialist third partyorganisation. This is interesting, as cash directpayments are sometimes regarded as the“royal route” to choice and control, with otheroptions portrayed as more prone to dilutionand compromise. The important point to note

here is that once a good third party budgethad been established, no-one saw a directpayment as a better route to being in control.

The importance of peer support

The families we talked with had all foundthemselves in uncharted territory as theyendeavoured to move from directlycommissioned services to a personal healthbudget supported by a third partyorganisation. Although there was limitedinformation available to them, they needed totake a leap of faith and engage with seniorNHS staff with the power to make significantdecisions affecting the future of their family.They knew they were pushing the boundariesand that the arrangements they wereproposing were largely new and untested.

All the families said that support from peers –other families and people in similar situations– was a fundamental factor in giving themthe knowledge and confidence to movethings forward. Peer support is indispensablebecause many of these families become veryisolated – for families of people with complexhealth needs, there is no equivalent tochatting at the school gates.

One family member said:

I’ve got some trusted friends whose sons anddaughters have complex health needs. When Iask them for support and advice, I knowthey’ll tell me honestly what they think. Theyunderstand where I’m coming from becausewe speak the same language. They knowwhat it’s like to be told that if you don’t

accept the carer that’s being provided, you’llhave to go without care. And they knowwhat it’s like to have to leave your child withsomeone you don’t like and trust because yousimply can’t stay awake 24/7. So, when I toldmy peers that I wanted to try and changethings but was scared to rock the boat, theygave me the help and support I needed. Icouldn’t have done it without them.

Another, in answer to the question “who hashelped?”, listed three peers from otherfamilies who had had taken on specific roles:

C helped by describing her story at thepartners in policymaking course. L helped byrunning the partners course and involving me.And J helped by explaining all about how apersonal health budget might help and then,critically, by bringing me together with thecommissioner, the finance person and thethird party organisation to sort out whatneeded to happen.

Peer support is of vital importance. At thenational level there now exists a small butvibrant personal health budgets peer network.An online resource, peoplehub,5 aims toconnect people with direct experience ofpersonal health budgets, empower peoplewith clear and accurate information andprovide an opportunity for their voices to beheard. Several contributors have posted aboutthe power of peer support. One says:

I know the absolute power of peer support!From these amazing folk on here, I’ve gainedconfidence, soaked up a lot of love in theroom and I now know I am a unique and veryhuman being!


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If personal health budgets and third partysupport are to grow and develop as we hope, then in addition to national and online networks, each local area will need to create the right conditions for active peer support.6 This is one of the majorcontributions that NHS commissioners will beable to make in the future.

Bottom-up, not top-down

Traditionally, planning in the NHS has beendone by managers, clinicians and otherprofessionals, with patients and their familieson the receiving end. More recently, people havebeen invited into this picture, but almost alwayslate in the day as respondents to consultationexercises, asked to make known their views inreaction to proposals from the managers. Anapproach of this sort does not reflect theintention of personal health budgets.

The families we met were the major players indesigning the care and support services theyuse, they continue to lead and manage theseservices alongside third party organisations,and they retain by far the biggest stake in thesuccess of the arrangements.

It is the relationship between the family andthe third party organisation that is particularlydistinctive and critical in this respect.

As one family member put it:

We learned quickly that this relationship with the third party was going to be the key one, so we worked closely and directlywith them, and did all the negotiations about practical issues.

It became clear just how important thisrelationship was a little later in the process,when things started to go wrong for this family.

It felt like a power struggle. We needed anew laptop to help us manage things. Weemploy 12 staff and needed a laptop for therotas, record keeping and communication. Wealso wanted to access e-learning modules. Wedidn’t know until much later that our thirdparty went straight to the primary care trustand told them “we don’t think they shouldhave a laptop”. The company didn’t value thetraining or expertise of our existing staffteam, asking people to repeat coursesunnecessarily. There was a lack of trust bothways. There was no choice. They used theCare Quality Commission as a stick to beat us.They were making around £20,000 a yearfrom the arrangement with us, for annoyingus. We got into a battle for control. Theyimposed things on the family. They had poorsystems and record keeping, not based on B’sneeds or circumstances, a one-size-fits-allservice. We developed our own systems thatworked for B. It was very stressful anddisappointing. There were two systemsrunning. We did what we had to do, and theytried to make us conform to their system.Possibly they were overanxious about B’sneeds and the risks to them as a company.

It was daunting for the family to go back tothe commissioners and explain that thingsweren’t working. The family were worriedthat the arrangement would be perceived as afailure, and the personal health budget wouldbe taken away from them. For this reason, thefamily were perhaps even more forthright and

assertive in seeking out and engaging analternative local provider. On this secondoccasion, they were much clearer about whatthey were looking for:

We negotiated. By then we knew thequestions to ask, based on our experience.

The fact that the second company immediatelyunderstood what the family needed helpedenormously. But the point of this story is thatit was the family making the running, settingthe parameters and defining the measures ofsuccess. They knew what they needed for agood life, and they went out to get it.

Not all families will want, or be able, to sustaina role as active as this. And although theinitial third party budget didn’t work for thisfamily, it might still be successful for others.

Personal health budgets (and personalisation)7

are about a redistribution of power andresponsibility. People who use health servicesand their families are asked to play a moreactive role on a continuing basis, on theunderstanding that sharing responsibility is agood thing. It leads to better outcomes andreflects a more mature relationship betweenhealth professionals and the public.

The importance of developing trust

For many families, the need to gain or regaincontrol is rooted in a sense of vulnerability andbroken trust: a much loved family member hasserious health problems and relies on others,

sometimes just so they are able to go onliving. The disengaged nature of therelationship with health professionals meansthat levels of trust are often low, while levelsof stress are correspondingly high.

For our families, one of the most attractivefeatures of personal health budgets and supportfrom a third party organisation was theopportunity to start on a new footing and builda new type of working relationship based onmutual respect, common sense and trust.

The family member quoted above described theway the relationship with the second third partyorganisation was initiated as “like a courtship”.The family had already had one bad relationshipwith a third party, so second time aroundthey were more experienced and prepared.

We knew the questions to ask, based on ourexperience with the first organisation. Trust inthe relationship was critical. They needed totrust us, that we would do a good job. Weshowed them our policies and how weoperated. I trusted them because of theirvalues. Ultimately, it was a marriage made inheaven, an equal partnership.

Trust is, of course, a two-way street. Aninteresting feature of the arrangements weheard about is the contrast between theformal and informal agreements that governthem. A formal agreement is a contractbetween the NHS and the third party, whichstates exactly what services are provided, overwhat period, in return for what sum of money.The services usually include employing a teamof staff to provide care and support, entailing

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responsibility for a whole range of legal andregulatory duties (employment and tax law,health and safety, Care Quality Commissionrequirements).

Informally, what we heard about in all caseswas a very high level of trust between the thirdparty and the family, so that many of the taskswere, in effect, delegated to them. In one case,the family is almost entirely responsible for staffrecruitment, management and supervision,despite the fact that this is formally (andlegally) the responsibility of the third party. Thisis precisely the sort of arrangement that thefamily wants so that they can take control.They have the reassurance that they can call onexpert back-up from the third party if theyneed it, which is very important to them. Acouple of instances were cited where they havecalled on back-up from the third party,including one involving a disciplinary issuewhere the third party issued a written warningto a staff member.

The consensus from families is that thisapproach works well and mitigates the senseof powerlessness they feel – at difficult timesthe family can say to the third party, as onemother put it: “don’t leave us on our own,guys”. But there is a sense of precariousnessabout the informal nature of the relationship.Far better, several people commented, if therecould be something formal as a back-up,perhaps a letter of agreement between thefamily and the organisation, in effect anaddendum to the contract between the NHSand the third party. This could outline therespective roles and responsibilities of the third

party and the family. These will no doubt varygreatly, but will include staff issues –supervision by the family, whistle blowing,access to training and developmentopportunities, and so on.

Who co-ordinates the service?

Most of the families we interviewed includeda young person with complex health needs,and one involved an older man withdementia. The support needed by all thesepeople is highly sophisticated, involving theuse of assisted ventilation. There is a need formany consultations with clinicians fromdifferent disciplines. There are frequent andoften unpredictable crises or emergencysituations, the cause of which may be unclear.The necessity for good co-ordination, bothclinically (across specialists) and in terms ofthe day-to-day service, is paramount.

One of the main criticisms families had ofdirectly provided services was that they are oftenpoorly co-ordinated. Traditional services rarelytake account of the specific needs, requirementsand wishes of a particular family. In crisissituations, they can revert to a medical modelmore suited to hospital care than to treating aperson in their own home. A difficulty severalfamilies encountered is the challenge of co-ordinating services when a person has verycomplex health needs. The families reported thata personal health budget enabled them to co-ordinate all the day-to-day support, allowingthem to take a whole-person, whole-familyapproach that works extremely well.

The third party budgets we heard about wereenhanced by robust care plans, clear roles andresponsibilities and, especially, agreeingmeasures that mean the family has realinfluence and oversight over their familymember’s health needs. There are a numberof variations in how this can work.

In one case, a family member is actuallyemployed (using the personal health budget)to work for a few hours a week to co-ordinatethe team, plan rotas, make appointments andother practical arrangements. One third partyorganisation we interviewed said it isparticularly keen on such arrangements, whichmean the aspects of the service that needdetailed attention are the responsibility ofsomeone with detailed knowledge of theperson and their home situation, and with anincentive to get things right. In other cases,the family takes on this responsibility unpaid.Another option is to pay a team member as asenior to co-ordinate things.

None of these arrangements takes away theneed for a lead clinician. A well run personalhealth budget will enable a more normal lifeand improve health outcomes, but it will noteliminate the need for clinical input. We canmitigate the impact of long term healthconditions by having robust emergency andcontingency plans, but everyone with apersonal health budget who has complexhealth needs will require the support ofknowledgeable, empathic and holisticclinicians, backed up by a 24-hour on-callservice. For many people eligible for NHSContinuing Healthcare, the complexity of theircondition is not well served by scheduled

(three-monthly or six-monthly) appointments.As one clinician noted:

they need to see doctors when they need tosee them, rather than when the service dictates.

Getting the right staff, andpaying them for the job

Finding and supporting the right staff for aperson with health needs and their family iscritical. This varies from person to person, andfrom family to family, and this is why we talkabout personalisation, an approach withpersonal circumstances and choice at itsheart. One family member, a mother, told usabout the kinds of people she wants tosupport A, her daughter:

I want people who see the big picture andwho are able to understand A’s life. Inessence, I’m not looking for carers, I’mlooking for people to be A’s responsiblefriends. If A left home, I might want a personin a more traditional caring role, but at themoment I do the caring/managing bit. I wantA’s personal assistant to tell me she’s had agood day, not that she’s had a seizure.

This mother went on to talk about theimportance of building a team with the rightattitudes, and also with the right mix ofpersonalities and approaches:

The team complement each other. One isreliable and flexible … more like us than theothers. If I didn’t have Mrs Flexible in theteam, it wouldn’t work.

Some specialist health expertise may also beneeded. One young person has multiple

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health needs: he has a tracheostomy and agastrostomy, and uses continuous positiveairway pressure to support his breathing atnight. The team needs to include people whoare confident in working with these issues.They don’t all need to be qualified nurses,whose skills may cover a broader range, butwho may lack experience with the particularprocedures needed here. In this instance, it isimportant that there is one trained nurse toprovide some day-to-day clinical leadershipand to take an overview of health needs. Thiswill be true of many families who opt forpersonal health budgets and third partysupport in the future. There will be anincreasing need for trained and specialist staffin these roles, and third party organisationswill need expertise to support families torecruit and manage them.

So building the team is complex, a matter ofgetting the right skills, attitudes andpersonalities together in the rightcombination. Third party organisations havebeen able to help in advising and assistingfamilies to draw up personal specificationsand job descriptions, placing adverts andmanaging a recruitment and selectionprocess. One organisation told us:

We start by getting the family to think aboutwhat their ideal staff member would bringand working up a job description andpersonal specification. This sometimes bringsup issues in relation to the Equality Act (eg“we don’t want support staff with children ofschool age”), so we have to advise themabout what is lawful and what is seen asgood practice. A traditional competency-

based approach to recruitment doesn’t workhere because the important factor has to behow comfortable the person is with theirstaff, and they need to find a way to judgethis … Not everyone needs detailed supportwith recruitment, but most do.

A central issue in the relationship between the three parties – commissioners, families andthird parties – is setting and reviewing pay ratesand other conditions of employment for staff.In strictly contractual terms, these are mattersfor the third party (which must take account ofemployment law and minimum wageregulations). Families point out that good payand conditions are the main ways to attract andreward staff, and also the way to shape theservice around the family’s requirements.

One family we talked with wanted to offerpay rates commensurate with the complexityof supporting a person with high needs in thecommunity. In agreement with the NHScommissioner, they set their pay rates in line withNHS pay scales which enabled them to offer thesame terms and conditions as the local NHS longterm ventilation team. Families are very insistentthat they must be granted access to theselevers if control is to mean anything at all.

Managing and supporting the staff

Some families bring experience of managingstaff from the world of business or elsewhere;others have less experience and confidence.The important point is for arrangements to beflexible and amenable to tailoring to differentcircumstances and wishes.

The approach should always reflect thefamily’s wishes and personalities. We wouldnot expect, or wish, that each personal health budget arrangement looks or feels the same, nor should they attract staff withthe same attributes. Some people operatebest in an environment with more structureand rules, some with less. Some people want to be doing active things out of thehome, others prefer to be quieter and spend more time indoors. It is important that the third party organisation is sensitive to these issues and, where necessary, provides advice, assistance and hands-on management.

Direct staff supervision is very important incare and support services, particularly incircumstances where staff are intimatelyinvolved in a family’s life and provide personalcare within the family home. Supervisionneeds to be given a high priority and itspurpose needs to be clear to all. It needs tobe regular and uninterrupted, and a recordshould be kept to which each party hasaccess. Many of the families interviewed arekeen to provide supervision themselves, andthere is certainly a case to be made for adirect line from the family to staff. Many staffwill also need specialist advice and oversight,as well as the right to raise and discuss issueswith their employer (the third party) from timeto time. What is most important here is aprocess to ensure third party organisations areopen and responsive to a variety of situations,and are mindful of both the needs of theperson and family, and their legal and goodpractice responsibilities as an employer.

The representatives of third parties weinterviewed had some clear views about theirmanagement role in relation to that of thefamily. One framed this as a distinctionbetween the organisation’s role in providingthe conditions for success, guiding the familyand intervening as needed along the way; andthe role of the family in taking responsibilityfor day-to-day management (such as settingup rotas and finding staff to provide cover).

Expectations regarding training anddevelopment, and the opportunities madeavailable to staff, are of central importance.Again, third parties have been able to help andadvise on this, sometimes offering imaginative,person-centred approaches to training thatinvolve the person with health needs, andsometimes basing training in the family home.

The important point for many families is thatthey are involved as (at least) equal partners inall the processes that involve staff. Thisincludes setting the probationary period andsigning it off as passed by a member of staff,and disciplining staff who break the rules.

Importantly, although the contract is betweenthe NHS and the third party organisation, thefamily is very much in the driving seat. Thethird party provides advice, assistance andreassurance. Both families and third partiesinterviewed told us they were happy with thisarrangement, but this approach does requirea particular management style by the thirdparty, as well as a very clear vision in relationto what personal health budgets are actuallyfor. Not every organisation will approachthings in this manner.

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Managing risk

We know from experience with personalbudgets in social care that one of the keys tosuccess in achieving good outcomes is theright attitude to managing risk. The sameapplies to people with personal healthbudgets, albeit in circumstances where, forsome at least, there are continuous andserious risks to health. The families weinterviewed were very clear in their views:what they want for the person they care for isa good life, not simply a safe life. Theystrongly assert that they know their familymember better than any professional can, nomatter how skilled, and it is in theirfundamental interest as a family to ensure heor she is happy, safe and well. This isn’tachieved by avoiding risk; rather it is done bytaking risks in sensible and planned ways.

One family member said:

No-one can have the same experience ofknowing A as me. No-one has seen as many seizures or as much mania. … They don’t have the knowledge to keep her safe and healthy … she’d be over-medicated; she’d have a gastrostomy; she wouldn’t be alive today.

One third party organisation described its approach as follows.

We take a very common-sense approach torisk, starting from the perspective that theperson or family know what’s best – theyknow how to live their life and they aremotivated to stay safe. Risk-averse behaviour

puts unnecessary barriers in people’s way, andtraditional risk assessments add to costs. Wehad a recent example: a mother and herdaughter wanted to use a hotel in London toattend a conference, but the agencysupporting them said this was not allowedbecause they had no risk assessment of theoverhead tracking for the hoist. This seemedto us to be both silly and unnecessary,particularly as the daughter is light and themother is very used to moving her at home.

The terms and conditions of this organisationstate clearly that they are there to support theservice user in their home, or wherever theymay be. This is a clear indication that thepersonal health budget holder is in control,and the function of the third party is to assistthem in getting what they want and need,while ensuring they stay safe and well.

This approach – risk enablement – issupported in social care by a range of person-centred planning tools,8 which help the family think through what they want to achieve, how to achieve it, and howto stay safe; and by policies and procedures of local authorities to assess, scrutinise andsign off “risky behaviour” and, wherenecessary, to propose action to help theperson mitigate and manage the risks they are taking to live a good life.

The personal health budgets guide‘Implementing effective care planning’9

puts it like this:

When people use personal health budgets,they plan how to use their budget creatively,

to tailor their care and support to improvetheir situation and to achieve their personalhealth outcomes. Part of that planningprocess must include weighing up benefitsagainst any possible risks of particular aspectsof their care plan.

People will want to discuss the merits ofdifferent treatment options with theirclinicians. When considering a choice of care providers and third-party organisations,they may also want to seek information more widely, and to consult with other people (for example friends they trust) andperhaps with people who have similar health conditions.

Some people will use their budget to continue to purchase traditional services thatthey find work well for them; some will wantto use it to meet their health outcomes indifferent ways. It will not be possible simply to rely on existing regulations and protocolsto manage risk, and it could be argued thatthe regulations were not working wellenough in the old system. NHS commissioningorganisations will have to devise processesthat balance protection of the person and the organisation with the person’s right to self determination.

These processes should also take account ofthe contribution of third party organisations intheir role of supporting people and families touse their personal health budgets to live thelife they choose, without eliminating allpossible risk.

Commissioners’ role

The staff responsible for commissioningpersonal health budget arrangements will bewithin clinical commissioning groups underthe NHS reforms. These bodies play a criticalrole in ensuring the success of personal healthbudget arrangements, particularly at this earlystage and for people who are keen to use athird party. How might commissioners help?

The local commissioners we met and heardabout were, for the most part, open-minded,helpful and flexible. They listened to families anddemonstrated commitment to understandingtheir difficulties and anxieties, particularly inrelation to their experience of directly providedservices and their fears for the future.Commissioners also demonstrated a degree ofpragmatism: where families were saying existingarrangements weren’t working, but madesuggestions to improve matters, commissionerswere mostly happy to try these out.

Commissioners lacked a body of experience(or detailed policy and procedures) to guidetheir practice in relation to personal healthbudgets and third party models. It is to thecredit of the commissioners we came acrossthat while they may have known little aboutpersonal health budgets initially, they werewilling to do the necessary research and takea leap of faith to support the family and thethird party organisation to construct a newarrangement. They did so while paying dueregard to existing rules and regulations andthe need to manage budgets carefully.

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Two families (in separate locations) told usthat the commissioner agreed to support athird party budget so long as costs werecontained at roughly the pre-existing level.

This point raises important issues of equity. Atthe time of our interviews, NHS commissionersworking with families had to use the cost ofexisting services as the basis for calculatingpersonal health budgets. A national frameworkis in place which provides guidance on eligibilityfor NHS Continuing Healthcare,10 and advice isavailable in the personal health budgets toolkiton ways to set a personal health budget.11

Families will no doubt welcome clear and fairrules. However, the NHS needs to learn fromthe experience with resource allocation systemsin adult social care, many of which are undulycomplex and restrictive, and in some localitiestook a long time to develop and agree.

Interviews with families and others suggestedthe following additional points forconsideration by commissioners.

n Co-ordination of the support arrangementis critical in terms of both effectiveness andefficiency. Commissioners need to considertheir own role, along with that of cliniciansand others, in determining how best todevelop robust arrangements.

n The cost of putting in place a third partybudget must be included in the personalhealth budget, so that people are notdisadvantaged or excluded when choosingthe best way to hold and manage theirbudget. There will need to be clear

information about the costs of third partybudgets as well as the benefits they bring.This will ensure third party budgets are aviable option for people who can’t have, ordon’t want, a direct payment, promotingequal access for all.

n The formal documentation supporting thirdparty arrangements varies enormously in its scope and level of detail. The families we spoke with favoured formalarrangements that clearly set out the roles and responsibilities of all concerned,including themselves – hence thesuggestion of a letter of agreement (see page 11). Formal documentation needsto be clear, unambiguous and in plainEnglish. It should focus on the objective of securing better health outcomes through enhanced choice and control.

n The way a personal health budgetarrangement is reviewed, in terms of itssuccess in achieving outcomes for theperson with health needs and in terms ofvalue for public money, is also important.Review processes varied significantly amongthe families interviewed. There is nowconsiderable experience in the field of socialcare personal budgets about what isimportant in the review process. Thissuggests developing protocols that includeall parties (commissioners, third partyorganisations and families) and that regardthe review as a learning experience abouthow well things are working and the stepsneeded to make improvements.

This section illustrates the outcomesfamilies can hope to achieve if personalhealth budgets and third party budgetsare working well. It draws on the learninggained by one family whose first thirdparty budget failed. They learned that thecore values of the organisation, and theirwillingness to let go, are critical to thesuccess of a third party budget.

Here we suggest some questions that peoplecan ask to determine whether a third partybudget is a good fit for them. A case studyillustrates how the answers to those questions,and the subsequent approach taken by a thirdparty organisation, can help achieve thepurpose of a personal health budget – toensure 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.

Before their personal health budget was inplace, all the families interviewed saw theirsituation as pretty hopeless, with the prospectof a bleak future for the person they wereproviding care for. One mother describedherself as having experienced years of“absolute struggle”. The NHS staff she dealt

with seemed to recognise this and perhaps toshare her sense of desperation, and treated herson as an exception in agreeing a newarrangement: a personal health budgetsupported by a third party. This iscommendable, but now we need to movebeyond exceptions if we are to make thesystem changes needed.

Before and after

The families described life using a directlycommissioned service, and how life changedwhen they started to use a personal healthbudget held by a third party. They werewilling to take more responsibility for ensuringa good outcome in return for being able tochoose their staff team, have direct input intostaff training, and develop trustingrelationships. They wanted greater autonomy,better life chances for their whole family, anda more ordinary home life.

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4 Making third party budgets work well

Family life using a directly commissioned service

There always used to be a crisis on a Friday nightwhen everyone was going home.

There was a very high staff turnover.

There was minimal training related to our situation,but lots of generic tick-box training.

It wasn’t all bad because some of the carers werereally nice, but they were in such high demand from other families that we hardly ever saw them.

Some of the night staff were irresponsible – theyslept on shift and some even smoked. It seemed tobe difficult for the NHS to take disciplinary action.

The office staff seemed to be invisible when you needed them.

I was forever picking up night shifts at short noticebecause someone had made a mistake on the rota.

I was always chasing things up to make them happen.

Changes would be made to the rota and I wouldn’tbe informed.

My son’s carers were told not to get involved with us as a family because they were only there to dohealth-related tasks.

There was a lot of form filling which didn’t serve any useful purpose.

The staff had to wear uniforms that made them stand out.

I felt totally powerless in our own home.

I felt my life was passing me by. Sorting out my dad’s care was a full-time job.

I had endless people coming through the housechecking on us.

Life using a personal health budget held by a good third party

My third party’s great at sorting out niggles before they escalate.

Our staff team has been with us for three years now. It’s made such a difference.

Our third party helped us find new opportunities for developing our staff team. Two people have just done some postural care training.

I no longer feel I have to look after people whenthey’re in our house. It feels relaxed and natural now we’ve chosen the team ourselves.

Our team has really gelled together; there’s lots ofcontinuity and everyone is taking responsibility formaking it work. We know we can rely on them.

Our third party trusts us and we trust them. It’s agreat working relationship.

Our new team are much more reliable and flexibleand we can sort things out if they go wrong.

Our systems are clear and simple.

Communication is really easy. We all access the rota onGoogle calendars, which keeps everyone in the loop.

Recently I’ve had my own health problems and I’vefelt really supported by the personal assistants.

I wouldn’t go back to the old way of working EVER.

My son’s personal assistants fit in with our whole family.

At last our home isn’t overrun with people we don’t want to be there.

I’ve been able to return to paid work for the first time in years.

I have fewer meetings with professionals but I know where they are if I need them.

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The role of care planning in choosing the right third party organisation

From the development of personal budgets in social care, and from our experience todate with personal health budgets, we knowthe process of thinking about and drawing up a care plan is central to getting it right for people with complex needs. Person-centred thinking and planning tools,8 thatrecognise what is important to the person as well as what is important for them, aretransforming our thinking about care andsupport services. For this reason wesometimes talk about care planning as lying at the heart of self-directed support.

The planning process also represents an idealopportunity for people to explore whatmatters most to them when choosing a thirdparty organisation. It’s a chance to thinkabout what decisions they want to make andhow to make them. It’s also a chance to thinkmore about the process and practicalities forrecruiting a staff team, to explore whether thefamily wants (and is able) to conductrecruitment interviews themselves or whetherthey want the third party to do this, orwhether there is a middle course where theorganisation helps them. And it’s anopportunity to begin to map out the mostimportant aspects of service design andmanagement and the respective roles andresponsibilities involved: who provides staffsupervision and how; what arrangements areneeded for staff cover; what happens ifsomething goes wrong? People need to be

empowered to make decisions about themanagement style and qualities of their thirdparty organisation, and these discussions canunearth issues and help ensure everyone isclear about what is expected and how thefuture is likely to unfold.

It is important for the person to be able tochoose who, if anyone, they want to supportthem to plan. This is a critical role. Sometimespeople are happy and comfortable to plan ontheir own, particularly when they are given clearinformation about what’s expected of them. Butwhen planning for the first time, many peoplewill want to talk things through with someoneelse, preferably a person they feel comfortablewith, who understands their situation.

People need to feel it is possible for usefulchange to happen, and hopeful that theirday-to-day life can be improved. This isnecessary even when a person has adeteriorating health condition or is nearingthe end of their life. Having the chance tohear about real-life examples of what othershave done differently, and talking with peers,are two useful ways to share creative thinkingand generate new possibilities.

How to recognise a good third party

The following questions are intended to helppeople develop their own criteria for judgingwhether a third party organisation is a goodfit for them. They were developed from theknowledge gained by the family whose first thirdparty budget was unsuccessful (see page 9).

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They said:

When we entered into our first third partybudget we made a lot of assumptionsbecause they’d said all the right things. Theytalked about being person-centred and howfamilies are the experts in the care of theirfamily member, so we assumed they’d respectour wish to make decisions and to managethe day-to-day care of our son. Withhindsight, there were a lot of clues to the factthat we saw things very differently, but wedidn’t recognise them at the time – we wereprobably a bit naïve. We learned a lot fromour mistakes, so when we approached a newthird party organisation we knew the rightquestions to ask.

Questions to ask a third party organisation

n Do you have a track record in health? Can you describe or talk me through a personal health budget you’ve held that’s worked well?

n If you’re new to personal health budgets asan organisation, what do you think are thethree most important things to bear in mind,or that will guide your working practice?

n How do you hold the money? Is it in anamed account to be used only by me?

n Who chooses who will be employed?

n Who writes the job descriptions?

n Who writes and agrees the adverts?

n Who decides the rate of pay and hours of work?

n Who does the interviews?

n Who decides how outcomes will be met?

n Are you happy for me to recruit my own people?

n Can I recruit family members?

n How will I know what has been spent and what’s left?

n Will you come to meetings with my NHScommissioner and myself?

n Will you make sure I’m fully included andcopied in to all correspondence with theNHS commissioner?

n What do you offer?

n How much will your services cost?

n Will your fee vary depending on how muchof your service I need?

n Who will write my risk assessments?

n Do you have a nurse who will help with riskassessments and signing off competencies?

n What do you see as your responsibility?

n What do you see as my responsibility?

n If things go wrong – what do you suggest we do?

n Whose money do you think it is?

Everyone has different priorities, and whatmatters most to one person may differ for thenext. The way organisations respond to thedeveloping market and to the need for morethird party organisations will also vary.

The following case study (in which the namehas been changed) illustrates a responsive andflexible approach to personal health budgets.

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Personal Support community interest company

Personal Support community interest company aims to empower personal health budgetholders and their families to manage care and support arrangements in their own way. Thecompany is commissioned by the NHS to do this, and is clear in all its documentation thatmany functions normally considered the responsibility of the organisation will be delegatedto families if they so choose. Their publicity says they:

aim to ensure people have real choice in all aspects of their care and support [and that they]start from the premise that things work best when individuals and families have control.

They have some standard policies and procedures, but it is made clear that these providebenchmarks only, and that the support arrangements for each person will need their owndetailed paperwork determined by individual circumstances. They work to help the familydecide what they need in terms of a support service. They work with the family to prepareprofiles of the staff, the skill mix needed, and the personality types that will work best,taking into account any particular issues for each family member. These profiles aretranslated into job descriptions and adverts. The family’s role in the interview processdepends on their experience and confidence. They may take the lead, or Personal Supportmay do this; the family always have the final say in who is appointed.

The family provide day-to-day staff supervision, with guidance from Personal Support,which is the legal employer. It is made clear that staff can always talk to Personal Support ifthey have difficulties or concerns. Staff training and development are tailored to the needsand circumstances of the person and family, and the family will usually be involved in someway in delivering training.

Personal Support and the family meet and review progress regularly and provide jointreports to the primary care trust. Any changes needed, including requests for additionalfunding, are agreed between the family and Personal Support, and are put to the NHS in ajoint submission. Personal Support charges a simple fee on a sliding scale depending on thelevel of support people want. Records of all financial transactions (including managementfees/profits) are provided for the family.

Future developments

Personal health budgets and third party budgetswill help to bring real choice and control forpeople with health care needs in England.However, some major challenges remain.

This guide concludes with some pointersbased on what families have told us abouttheir experience to date, and how this mightaffect a future implementation programme.

n To date, third party budgets have beenproposed by families themselves, who throughluck, persistence or good search skills haveunearthed a solution that works for them. Inthe future, NHS staff need to have knowledgeand confidence about all the options formanaging a personal health budget, and tobe in a position to put families in touch withappropriate local organisations. Theorganisations need to be both third party andlocal peer-led organisations.

n For this to happen, the few sapling thirdparty and peer-led organisations that nowexist need assistance to develop and grow,and more seeds need planting andnurturing. A similar process has happenedin the world of social care since the take-offof personal budgets, and there are lessonsto be learned, both positive and negative,from this short history. There is animportant role for commissioners in findingways to stimulate the local market.

n Third party organisations face a number ofchallenges. At this stage, most NHS staffhave a limited understanding of the ethosand values of this new approach. Sometimesthey have a limited understanding of the

Department of Health’s own policy, and ofthe role third party organisations can play.One organisation described some inflexibleapproaches, giving the example of an NHScommissioner spending £40,000 a year ontaxi fares, but who would not considerpurchasing a vehicle at much lower costbecause this breached their rules on assetbuilding. Commissioning practice is veryvariable across the country. Some NHSorganisations add layers of monitoring tosatisfy internal audit demands, while othersdon’t see this as necessary. The NHS reformsprovide an opportunity to introducecommon sense and standardisation here.

n The Care Quality Commission plays animportant role in regulating and monitoringorganisations that provide personal careservices. One family had struggled to getaccurate and consistent advice from theCommission. The impact of personal healthbudgets and new ways of working will needcareful consideration. One organisation madethe point that for micro-providers in particular,the cost and complexity of the regulatoryprocess are disproportionate to the impact.

n Families regard it as very important thatcontracted third party organisations arepermitted to delegate many of theirfunctions to families in order to facilitatechoice and control. To reflect this, and topromote the health, welfare and integrity ofall parties (commissioners, organisations,families), formal arrangements need toreflect this reality. This should include lettersof agreement with families, setting out theirroles and delegated responsibilities.

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These recommendations from families are to those developing personal health budgets locally, regionally and nationally.

Theme

The need to control your own destiny

The importance of peer support

Bottom-up, not top-down

The importance ofdeveloping trust

Who co-ordinates the service?

Getting the right staff and paying them

Managing andsupporting staff

Managing risk

Commissioners’ role

Making third party budgets available to all

Recommendation

That all available steps are taken to ensure third party budgets are available as an option to everyone taking up a personal health budget; and that thesearrangements are supported by robust policies and procedures that devolve every decision concerning the family to the family.

That the NHS invests in peer support and recognises its value in helping peopleand families make good decisions about their choice of third party.

That families are expected to be actively involved in planning and establishingtheir service. The degree and nature of involvement will vary, and families will besupported to contribute in their own way.

That there is a formal letter of agreement between the family and the third partyorganisation setting out roles and responsibilities, which is appended to thecontract between the NHS and the organisation.

That robust arrangements for co-ordination (medical and care) are always agreedas an important aspect of the personal health budget agreement. The precisenature of these arrangements should be agreed with the family.

That families can recruit their own staff and offer terms and conditions that attractthe right staff (eg pay rates commensurate with the designated role and tasks andthat recognise the complexity of supporting a person with high-level needs). Decisionssuch as pay rates need to be agreed in advance with the NHS commissioner.

That third party organisations are sensitive to the different capabilities and wishesof families in relation to staff management issues, and they respond appropriately.

That the NHS provides advice on risk management that seeks to enable a goodlife, and that balances protection of the person and the organisation with theperson’s right to self-determination.

That the NHS is charged with playing an active role in promoting and supportingthird party organisations as a viable option for personal health budget holders.

That the NHS takes steps to stimulate the supply of a range of viable, local thirdparty organisations.

5 Recommendations from families

1 Department of Health. Options formanaging the money. 2012. Personal health budgets toolkit.www.personalhealthbudgets.dh.gov.uk/toolkit

2 Sanderson, H., Bennett, S., Stockton, S. andLewis, J. Choice and control for all: therole of individual service funds indelivering fully personalised care andsupport. Groundswell Partnership. 2012.www.groundswellpartnership.co.uk

3 In Control. Individual service funds forhomecare. 2013. www.in-control.org.uk

4 Personal health budgets website. About the pilot programme.www.personalhealthbudgets.dh.gov.uk

5 Peoplehub personal health budgetsnetwork. www.peoplehub.org.uk

6 Department of Health. Developing a local peer network. 2012. Personal health budgets toolkit.www.personalhealthbudgets.dh.gov.uk/toolkit

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

8 Helen Sanderson Associates. Person-centred thinking tools.www.helensandersonassociates.co.uk

9 Department of Health. Implementingeffective care planning. 2012. Personal health budgets toolkit. www.personalhealthbudgets.dh.gov.uk/toolkit

10 Department of Health. Nationalframework for NHS ContinuingHealthcare and NHS-funded nursing care. 2012. www.dh.gov.uk

11 Department of Health. How to set budgets – early learning. 2012. Personal health budgets toolkit.www.personalhealthbudgets.dh.gov.uk/toolkit

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6 References

http://www.personalhealthbudgets.dh.gov.uk/Topics/Toolkit/HowPHBswork/Options

http://www.groundswellpartnership.co.uk/choice-and-control-for-all

http://www.in-control.org.uk/5715

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

http://www.peoplehub.org.uk

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

http://www.centreforwelfarereform.org/uploads/attachment/303/health-efficiencies.pdf

http://www.helensandersonassociates.co.uk/reading-room/how/person-centred-thinking/person-centred-thinking-tools.aspx

http://www.personalhealthbudgets.dh.gov.uk/Topics/Toolkit/HowPHBswork/Care

http://www.dh.gov.uk/health/2012/11/continuing-healthcare-revisions/

http://www.personalhealthbudgets.dh.gov.uk/Topics/Toolkit/HowPHBswork/Budget

Gateway Ref No. 17509

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]

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