5 PHB Lessons Learnt

Written by Jo Harvey

I’ve been following with interest the conversations from @NHSPHB this week where people have been sharing their experiences of personal health budgets (PHB). Some questions have been raised too, such as, how do you leave room for people to take risk in support planning, what does good health planning look like and how can it work in practice.

As a healthcare professional and person-centred thinking practitioner I have been blogging about personal budgets in social care and in health for some time from personalisinghealth.com and this site. I have also been involved in the personal health budget work that has been taking place around the country and so have direct contact with the decision makers (the people who decide on the allocation of funds), the brokers (the people helping people to develop their plans) and the person for whom the budget is for. As such I’ve found that I’ve been gathering information along the way, which might well be of assistance to people applying for PHBs and writing personal health plans.  As this is all very topical this week, I thought I should share! Here are my top 5 PHB lessons learnt:

1: Don’t get confused by the language. Like most things in this field, the language around health planning can seem a little daunting to begin with. Not least because some areas around the country call it ‘personalised care planning’ whilst others refer to it as ‘support planning’. They mean the same thing; the plan that is written to show how a personal health budget (PHB) will be spent in order to support someone to live life the way they choose.

2: Keep it simple. We are in danger of seriously overcomplicating the health care planning process and I’d like to think we could take what we learnt from personal budgets in Social Care and apply it to health so that we can avoid this. We are all guilty of course. I myself, in my eagerness to be thorough and to pass on my full knowledge have been involved in producing lengthy documents that detail every possible way in which good support can be achieved and why. The truth is often, the more you write, the less someone will read, and in the case of a support plan it is absolutely essential that you get the decision maker to read the key elements. So for example, instead of 6 pages of information about a person, their gifts and talents and the things that are important to them, how about using a one-page profile that communicates who they are, what is important to them and how best to support them on a single sheet? The decision maker is far more likely to read this and therefore make a funding decision based on a deeper understanding of the person it is for. ‘Risk’ is another area of planning that can be refined. All too often we take a blanket approach to risk cumulating in a 19-page risk assessment when what we can do is ask; what risks are there involved in the way you want to achieve your outcomes? Is this risk important to help you live your life the way you want? If it is – how do we mitigate the risk?  For those big risks I use the person-centred risk process to keep it simple.

3: Getting good information to include in support plans involves having a different kind of conversation.  As health professionals we have a lot of processes aimed at getting set information from people about their health conditions and medication. Assessing people in this way is how we were trained, so gathering information in the context of how someone wants to live their life whilst still recording this information for an official purpose requires a very different approach. There are different ways you can do this, personally I use person-centred thinking tools. They enable me to have good conversations with people, keeping them at the centre of any decision making. As well as doing this, they provide templates to formally capture this rich information so that funding decision makers can follow it easily – ideal for applying for PHBs.

4. Have a good structure. In my experience if people enforce planning templates that are too prescribed it can stifle creativity but if you give someone a blank sheet of paper, they often don’t know where to start.  I think having an easy to follow structure when embarking on writing a health plan is really helpful. Papers like “Implementing Effective Care Planning” written by Rita Brewis, which can be found as part of the Person Health Budget Toolkit, are helpful in providing this structure and this is something that I have referred to when creating the headings that I’ve found work best. These are; One-page profile, More Information about Supporting Me, Working/Not Working, Outcome Grid, Risk and Contingency, Budget Sheet, Decision Making Record and Action Plan.  Regardless as to which headings you use in your plan there is one theme that needs to weave throughout and that is the demonstration of how the person-centred outcomes link to the person’s eligible need and how the spend of the budget will help achieve these outcomes. This is what the decision maker needs to reference.

5: Use the best person for the job. All too often health plans are written on behalf of people as a default without considering their capacity to be more involved. It is true that sometimes a person’s health condition can be so severe that they are unable to contribute heavily but we should not start with this assumption and wherever possible the person or the close family should be supported to produce their plan. This is referred to as the ‘empower and enable’ approach in Social Care and certainly has its place in health.

I hope this has been useful. If you want to join is on the PHB conversation follow us on @HSAUK and search for @NHSPHB

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Budget decisions using person-centred thinking tools

Written by Jo Harvey

When working with people who have personal health budgets I have found it helpful to use person-centred thinking tools to walk them through their spending decisions. Harriet’s story is a good example of how to do this in practice.

Harriet is 48 years old and lives at home with her husband and daughter. She has a severe lung condition, alongside a number of other long-term conditions and she needs additional oxygen provided via an oxygen concentrator.

Harriet has had a personalised care plan for a number of years and was reviewing what was working well about her support that she wanted to keep the same, and what was not working well that she wanted to change. One of the things she described as not working was how she received her additional oxygen. The oxygen concentrator is a very large machine that requires mains power. This means it is not portable, leaving Harriet unable to leave the house for any length of time. Being housebound had left Harriet feeling depressed and withdrawn.

When exploring the outcome that Harriet wanted to achieve in relation to this, the Sorting Important to and Important for tool was used. This tool allows us to explore the issue in more detail and to find a balance between what is needed to keep someone healthy and safe and what is important to them. Harriet was asked what was important to her in relation to this specific issue, and she was also asked what was important for her to be mindful of, in relation to keeping her healthy and safe.

Important to / Important for

Important to / Important for

Using those two pieces of information a more specific and measurable person-centred outcome was developed.

“When I am well I am going out with my friends for shopping and coffee, twice a week. Whilst out, I am maintaining my oxygen saturation at above 96%”

Having identified what outcome Harriet wanted to achieve it was then possible to explore in more depth the obstacles that were stopping her from achieving it. Clearly the lack of portability of the oxygen concentrator was the main issue. Harriet explored the possibility of purchasing or renting a portable oxygen concentrator using her health budget but the local oxygen provider does not offer a flexible range of options for renting so she had to purchase the equipment.

It is important when looking at solutions to then explore any risks to the person inherent in the solution and then to mitigate these risks to an acceptable level. In this case two risks were identified and mitigated; the risk of going out without oxygen and the risk of staying in and becoming more socially isolated.

The solution was to use a portable oxygen concentrator and the financial costs were then weighed up against the value of the outcome for Harriet.

In Harriet’s case she was able to use her personal health budget to pay for the equipment she needed to live her life the way she chose. Using the person-centred thinking tools not only helped her to find solutions to what was not working but also to explore the risks and find an outcome that was person-centred. Having worked through this process she was able to clearly demonstrated the need for the budget spend and evidence how this equipment was necessary for her health and wellbeing.

 

 

Mythbusters tackle misconceptions of personal health budgets

Written by Simon Stockton, Groundswell Partnership

Our seventh Mythbuster in the series. This one focuses on the misconceptions around how NHS money can be applied to treatments and services that are not endorsed by NICE and the impact of personal health budgets – I hope you find it useful!

The Myth:
NHS money can’t be used for treatments and services not endorsed by NICE, and integrated personal health budgets make this more difficult

Response
Personal health budgets can be used for treatments that have not been reviewed by NICE. Indeed not all services currently commissioned by the NHS have been considered by NICE and moreover enabling a flexible use of budgets is a key part of the government’s policy intention behind both health and social care budgets.

Evidence from the personal health budget evaluation led by Personal Social Services Research Unit (PSSRU University of Kent) supports this policy. Researchers found that there were distinct differences in the effectiveness of personal health budgets depending on how they were implemented. Where people knew the budget up front and were enabled to use that resource flexibly outcomes were significantly improved but where this was not the case reported wellbeing was actually significantly worse than it was for those in the control group. The importance of having choice and control over how the money is used to maintain health and wellbeing and have a positive approach to managing risks was also strongly emphasised by the Personal Health Budget (PHB) peer network and is reflected in the Department of Health’s (DH) summary guide to PHBs ‘How to get good results – key learning from the evaluation’. The need for a flexible approach is also evidenced in the second POET survey which reviewed the experience of over 1000 people using personal budgets for social care and 195 people using personal health budgets. Outcomes for people using health and social care budgets were similar and broadly very positive however the survey also found that inflexible and bureaucratic processes surrounding personal budgets can have an adverse impact on their effectiveness.

It is important to be mindful that the idea of permitting such flexibility can generate concern from some parties and it is important to build confidence and develop a shared understanding of how flexibility can be balanced against clinical risk. Many pilot areas that have built up experience of people using budgets in non-traditional ways emphasise the importance of sharing people’s stories with clinicians and frontline staff, as this helps to build confidence in permitting people to use their budgets in ways that might seem unusual but ultimately could improve people’s health and wellbeing outcomes.

In circumstances where the planned use of a budget is not approved, the health organisation should clearly communicate the reasons for refusal, for instance if a chosen provider is not a member of relevant regulatory bodies. Where people have personal budgets to meet health and social care needs the same principles should apply. In such instances, care and support planners have an important role to ensure they provide correct advice and guidance, help to manage people’s expectations about what is possible, and direct people to more specialist advice where needed. Care and support planners should know who to involve in the planning process and should take care to engage with the lead clinician – particularly around complementary therapies and where there is little experience of people using alternative treatments or provisions. People using budgets will also need to have the right information to enable them to make informed decisions about what to use their budgets for and getting this advice at an early stage can be immensely helpful.

Care planning and personal health budgets – Achieving better choice and control

Written by Jo Harvey

I work with people who achieve better choice and control in their lives by using person-centred thinking tools and who by using their personal budgets are directing their support in a way that suits them as individuals. Recently I collated some examples that I wanted to share with you to demonstrate how a person-centred approach can make a real difference to people. Today I’m sharing Olivia’s story.

Olivia is a young woman who lives at home with her Mum, Janet and brother James. Olivia is a strong, playful and expressive young woman. She has a number of health and life issues including; Severe learning disabilities, Epilepsy that presents itself in 4 different forms, a visual impairment, quadriplegia, scoliosis, sciatica and a pin and plate in her hip.

Olivia’s Mum had for a number of years managed a direct payment, which funded a small team of carers to provide support in the home. As Olivia’s health deteriorated she became eligible for Continuing Health Care funding and switched from social care to health. Because of the amount of control Olivia’s Mum had experienced with the direct payment, it was important to retain that control using a personal health budget.

When you have a personal health budget you need a support plan. This plan needed to show clearly who Olivia is as a person, what health needs she has and what good support looks like for her to meet those needs. It needed to show what is working well and not working well and what outcomes she wanted to achieve. It also needed to show how the funding was to be spent to achieve these outcomes.

Olivia’s plan was developed over three planning sessions involving Olivia, her Mum, one of her paid carers, her community nurse and her Mum’s advocate. The plan was developed using a number of person-centred thinking tools, and the plan was eventually used to agree Olivia’s funding and care package through a personal health budget.

Through the planning process there were two person-centred thinking tools that were particularly useful – Helps and Hinders and Working/Not Working.

Helps and Hinders is a newly developed tool which is designed to capture specific information about the things that people, families and professionals have learnt to keep the person as healthy as possible and what hinders them from being so. It can capture clearly the ‘expertise’ people and their families have developed in knowing what works on a day-to-day basis to support people with their health issues. It captures the ‘quirky’ not just the traditional.

Olivia's Helps and Hinders Tool

Olivia’s Helps and Hinders Tool

In supporting Olivia, her Mum Janet is most definitely the expert; she knows exactly what supports Olivia in the best way with all of her various health issues. When using the Helps and Hinders tool with Olivia there was one issue raised that was significant to keeping her healthy on a day-to-day basis.

Olivia receives all her nutrition, fluids and medication through a Vygon Transgastric Jejunal tube. She originally had a PEG but this was changed to alleviate abdominal discomfort, thought to be caused by an excessive build up of wind.

The company who provide the nutritional feed Olivia uses, advise that the feed be given in a specific amount and a certain time and rate. However, over time Janet has discovered that if the feed, fluids and medication are given in a specific but different order to that suggested, it can prevent the build up of excessive wind and further complications. Janet has discussed this with her GP and the nutrition company and both have agreed this is acceptable to support Olivia’s specific issues. Therefore it is vitally important that all those who support Olivia know and follow this practice. This was clearly recorded in her support plan and the details of the order and timings are recorded in her care plan at home.

When using the Working/Not Working tool to analyse her current support, Janet explained that when Olivia goes into respite care, the respite service refuse to follow the order of nutrition feed, fluids and medication as described, because it does not match their protocol. This results in Olivia coming home from respite very unwell and it can take up to two weeks for her health to settle again, negating any benefit that Janet gets from the respite care stay.

Olivia's Working Not Working Tool

Olivia’s Working Not Working Tool

Having identified this as an issue, an ideal outcome was discussed. The outcome agreed was ‘for Olivia to have 6-7 weeks per year of building based respite care that allows her Mum a proper break. The respite service will know and follow her specific routines regarding her nutrition/fluid/medication regime.’

From this a number of specific actions were developed to ensure this was implemented;

  • To make some referrals to other respite units.
  • To arrange a meeting to discuss the specifics of the regime and to identify whether the service has any protocols that might stop Olivia’s specific regime being carried out.
  • To develop clear written information of the feed and medication regime and why it is carried out in this way.

This ensured that Olivia is now receiving respite that meets her specific support needs and provides her Mum with a regular break, which means she can continue her substantial caring role.

Olivia’s story is a really powerful example of how important it is to capture and share rich information that specifically relates to an individual and not a condition or a protocol. By using person-centred thinking tools to uncover and communicate this information well, Olivia and her mum have achieved better outcomes, improved health and wellbeing.

 

 

 

 

 

Mythbusters; Health, Social Care and their approach to risk

Written by Simon Stockton, Groundswell Partnership

After a little bit of a break I’m pleased to share with you another of our personal health budgets’ mythbusters; our sixth in this series. This one focuses on the cultural differences between health and social care and the myth around their approach to risk. As before more details on this and all the myths in this series can be found in  “Tackling Barriers to Progress in Integrating Personal Budgets: Myths and Misconceptions”.

The Myth:
Approaches to risk between health and social care are very different and it isn’t possible to bring them together.”

In some ways one of the easiest myths to tackle as the key is simple – a shared person-centred approach to managing risk is self evidently the right approach and is a shared professional responsibility for both health and social care staff working with people with multiple needs.

A person-centred approach seeks to focus on people’s rights to have the lifestyle that they chose, including the right to make ‘bad’ decisions and to balance the clinical, financial and wellbeing risks against what is important to the individual.

However, knowing this is in itself is not enough to make it happen. We need to plan practical ways for health and social care staff to work together which make a seamless and person-centred approach possible. Locally, simple protocols can be used to improve the communication between organisations and to facilitate a more integrated care and support experience. Getting informed consent early on in the assessment process can avoid problems later and help ensure people understand why and how data might be shared and with whom.

Ensuring health and social care professionals have the right training and support to understand and make use of person-centred tools and approaches is also important. Many tools are freely available and can be very rewarding and enjoyable to use.  Shared training for health and social care professionals in person-centred approaches to risk is also a really helpful way to engender good practice.

Where there are capacity issues affecting people’s ability to consent, the Mental Capacity Act 2005 guidance (including the Code of Practice) should be followed to determine whether the person is able to make the decision and that appropriate steps are taken to protect their best interests.

Useful resources

Department of Health.
Practical approaches to safeguarding and personalisation. 2010
www.thinklocalactpersonal.org.uk

Social Care Institute for Excellence.
Protecting adults at risk: London multiagency policy and procedures to safeguard adults from abuse. 2011
www.scie.org.uk

Helen Sanderson Associates
Person centred thinking tools and person centred risk training
http://www.helensandersonassociates.co.uk/what-we-do/how/person-centred-practice/person-centred-risk.aspx

Moving from need to person-centred outcomes

By Jo Harvey

cropped-dimensionsjourney.jpg

When I began working with some Continuing Health Care(CHC) teams, I was surprised by the process of assessment. As a planner I always work with a patient to discover the outcomes they wish to achieve in relation to their health needs, however within CHC this is not always the case.

In order to secure CHC funding, it’s necessary to go through a comprehensive assessment process using a decision support tool and additional nursing assessments. The decision support tool is a complicated document with 11 different domains (communication, cognition, breathing etc) – that the assessor uses it to determine eligibility. This information is then used to develop some kind of ‘care prescription’ that is used to commission services from provider organisations to secure services for the patient.

However, I feel, this leads to commissioning based on need, often translated into hours,  rather than outcomes, and the patient’s idea of a good outcome is lost in the process.

Unfortunately, many practitioners struggle to understand what an outcome is, which I think can originate in professional training – my nurse training was very much centred around us being the experts as practitioners, and therefore we were told we needed to provide solutions. As a result of this, I think there can be a tendency to jump straight into embedding a solution in an outcome. Someone might say they want a car and we won’t necessarily recognise this as being a solution to a problem and not an outcome – the outcome would be, for example, providing transport for a patient so they can go to the supermarket or go and visit friends.

Recently myself and a colleague Julia Winter, have been working on a way of outlining the difference between solutions and outcomes to make this clearer for practitioners. We identified three questions for practitioners to ask patients, which aim to help with this differentiation:

*          what would it give you?

*          what would it do for you?

*          what would it make possible for you?

Ultimately, an outcome is something you can have some control over, it’s measurable, but there may be obstacles in the way of achieving it. A solution is more clearly defined – it is the resource you need to achieve your outcome: it can be an item or an activity, it can have a cost associated with it or it can be free.

Another technique I use to develop balanced person centred outcomes, is to use the person centred thinking tool “Sorting Important to and Important for Keeping you Healthy and Safe.” Once the person has identified a change they want to make or an area of eligible need, I discuss with them firstly what is important to them in relation to this and what needs to be in place ensure they stay healthy and safe in relation to this. Then the outcome combines both of these to form a well-balanced outcome that also addresses the criteria described above. Below is an example:

Issue to address

How I receive my additional oxygen is not working for me as it is stopping me going out of the house

 

 

Important to

To be able to spend time with my friends

each week when I am well

 

 

Important for Keeping me Healthy and Safe

To maintain my oxygen saturation at above 96%

Outcome

When I am well to go out and spend time with my friends twice a week and maintain my

oxygen saturation at above 96% when I am out

 

 

Once you’ve established what an outcome would be, you can then look for the right solution. You effectively look for a solution which would meet the patients and the clinician needs, and then do an assessment of any potential risk that may be associated with these solutions.

There’s a huge need for us to move away from service-led outcomes and towards person-centred outcomes, and ensuring solutions aren’t embedded in patient outcomes.

 

 

 

 

 

To share or not to share? Resolving our fears around information sharing in Personal Health Budgets

Welcome to our fifth blog in our series focused on debunking myths about integrating personal budgets across health and social care.  This week’s myth comes from the ‘Information and Data’ section of our report for the Department of Health: “Tackling Barriers to Progress in Integrating Personal Budgets: Myths and Misconceptions” (please read the full report at http://bit.ly/YvhHJY)

The Myth:

“Sharing information between Health and Social Care is difficult and this undermines our best efforts at integration.”

This myth is about the importance of information. Collecting the right information. Doing it only once. And sharing it safely and securely to improve the way things work for people. The complexity of our health and care systems make this a challenge and it is true that our best efforts at developing an integrated approach to personal budgets will be undermined if we don’t find ways to make these things happen. However, (and if you’ve been following these blogs you’ll be noticing a pattern by now!) there are many reasons to be positive. While there are obviously challenges, there are many ways and means people are finding locally to improve their information sharing and there is a more concerted national drive than ever before to get this right.

We all know the frustrations that arise from information being duplicated numerous times and the strain that repeatedly providing this information places on people accessing services. Without effective data sharing, opportunities are also missed to improve service coordination and the experience of care and support services.  While there is clearly still much to do in this regard, it shouldn’t be unduly difficult to share information between health and social care organisations so long as agreements and processes are in place to do this safely and appropriately within the legislative safeguards provided by the Data Protection Act 1998.

Sharing information effectively in health and social care is a critical building block towards integration and is at the centre of a number of recent developments in policy and practice. In 2012, the DH published its Information Strategy, which sets out a ten-year framework and route map to lead “a transformation in the way information is collected and used.” The strategy sets out the ambition that information be used to drive integrated care across the health and social care sector, underpinned by systems that ensure information is recorded once at first contact then shared securely between those providing care whilst keeping confidential information safe and secure. The strategy also describes the important role of culture change and IT, including electronic care records. In parallel, through the three year Common Assessment Framework programme now drawing to a close, a number of sites have been testing and refining systems to facilitate better information sharing between health and social care IT systems.

Locally, simple protocols can be used to improve the communication between organisations and to facilitate a more seamless and integrated care and support experience. In addition, explicit and informed consent needs to be sought early on in the assessment process to ensure people understand why and how data might be shared and with whom. Where there are capacity issues affecting people’s ability to consent, relevant guidance derived from the Mental Capacity Act 2005  (including the Code of Practice) should be followed to determine whether the person is able to make the decision and that appropriate steps are taken to protect their best interests.

Useful resources:

  • Data Protection Act 1998

http://www.legislation.gov.uk/ukpga/1998/29/contents

  • Mental Capacity Act 2005

http://www.legislation.gov.uk/ukpga/2005/9/contents

  • The power of information: putting us all in control of the health and care information we need, DH 2012

http://informationstrategy.dh.gov.uk/

 

Simon Stockton, Groundswell Partnership