Author Archives: Robyn Chappell

We’re delighted to announce a new partnership between peoplehub and MyCareBudget.org!

MyCareBudget.org is a “wiki” website, created by a community of people who run a care budget either for themselves, their children, or a close relative. All of the content is submitted by those who manage a personal health budget themselves, and is therefore informed by those who know what managing a personal health budget is like in real life.

The vision for MyCareBudget was developed early on in a research project that was being run by the Open Lab at Newcastle University, funded by the Engineering and Physical Sciences Research Council. The research was led by Peter Glick, a family carer, as part of his PhD.

Peoplehub contributed to the research alongside many other personal health budget holders. As an organisation, we strongly support the sharing of strengths and knowledge amongst the personal health budget community. We know from experience how important it is for people to have examples of policies and documentation when they are creating and running a care package.

The following text was offered by one of the people that helped bring MyCareBudget into being:

“This is an online peer support community platform that enables PHB users to share useful policies, documents and templates that have helped them manage their PHB for the benefit of other PHB users. This includes things like ‘Health and Safety Policies’, ‘Staff rotas’, ’employment law guidelines’ and ‘person-centred plans’ (just to name a few!).

It also points PHB users to other helpful resources and useful websites, as well as providing an opportunity for people to answer each other’s questions and provide peer support. It provides a ‘one-stop-shop’ for those starting out with managing a PHB, as well as those who are experienced budget managers, and enables them to become better in their management role.”

Up until the middle of 2023, the research budget paid for the cost of the IT (servers, emails, domain name). Peoplehub is pleased to have been able to take responsibility for funding MyCareBudget.org going forward in order to sustain this vital resource. This has so far included creating a new logo for the website, and further developments are planned.

Watch this space!

January 2024

NHS England has published updated guidance on the delegation of healthcare tasks to personal assistants.

The updated guidance can be read here: Personal health budgets: delegation of healthcare tasks to personal assistants

Peoplehub recognises that the guidance is intended for practitioners and Integrated Care Boards, who retain ultimate responsibility for ensuring that any delegation of healthcare tasks is done appropriately and safely.

Peoplehub’s focus is to enable people with long term health conditions and disabilities to have choice and control over the decisions that matter most to them. This guidance has great potential to support personal decision-making.

Due to the wording used at various points in this guidance, it also carries a risk of unintentionally limiting a person’s choice and control.

We therefore feel it’s important to highlight the following important points:

▣ Page 7 of the guidance states that:

“The decision to delegate a healthcare task to a PA should be made by a registered practitioner who is occupationally competent in the task and is accountable in relation to that aspect of the person’s clinical care.“

Peoplehub’s view:

We recognise that the ultimate responsibility for delegation of healthcare tasks sits with the accountable registered practitioner. However, the decision should be a joint decision between the person reliant on the healthcare task (or their representative), the registered practitioner, and the PA. For example, a District Nurse might want to delegate aspects of catheter care to a PA, and the PA may be willing to do this. Ultimately, the person reliant on the healthcare task (or their representative), must have a choice as to whether they are confident and comfortable for the tasks to be delegated.

▣ On page 8, it says:

“A three-way agreement, where all parties (the registered practitioner, the employer and the PA) record that they are happy for the task to be delegated can be helpful. This can also include information about the extent and limits of the delegation, how support will be provided, competency maintained, and when and how to seek help.“

Peoplehub’s view:

A three-way agreement is essential to record everyone’s consent. It should also include information about the extent and limits of the delegation, how support will be provided, competency maintained, and when and how to seek help.

▣ Page 9 of the guidance covers roles and responsibility in delegating healthcare tasks, and says:

“Understanding the responsibility to delegate appropriately and the risks both in not delegating or not delegating appropriately, along with sound protocols, will help practitioners feel confident and support safe and effective practice.”

Peoplehub’s view:

It is undoubtedly important that practitioners feel confident and enable safe and effective practice. It is equally important that both the person reliant on the healthcare task (or their representative), and the PA being delegated to, understand the risks and feel confident and supported.

▣ Page 11 covers the role of the care co-ordinator, and says:

“The person requiring the care or their representative has been consulted as to whether they are happy in principle with the task being delegated to their PA.”

Peoplehub’s view:

Peoplehub feels that the decision to delegate should be a joint decision and conversation rather than a consultation.  

▣ The checklist on page 15 of the guidance says:

“Is delegation in the best interests of the person and have they given their consent?“

Peoplehub’s view:

“Best interest” decisions should be primarily held by the person reliant on the healthcare task (or their representative). Principle 1 of the Mental Capacity Act 2005 states that: “A person must be assumed to have capacity unless it is established that he lacks capacity.“

The Mental Capacity Act 2005 Code Of Practice goes on to say that: “The Act’s starting point is to confirm in legislation that it should be assumed that an adult (aged 16 or over) has full legal capacity to make decisions for themselves (the right to autonomy) unless it can be shown that they lack capacity to make a decision for themselves at the time the decision needs to be made. This is known as the presumption of capacity…. People must be given all appropriate help and support to enable them to make their own decisions or to maximise their participation in any decision-making process……. A person should not be assumed to lack the capacity to make a decision just because other people think their decision is unwise. This applies even if family members, friends or healthcare or social care staff are unhappy with a decision.“

Skills for Care, along with the Department for Health and Social Care, has developed some Guiding Principles and Supporting Resources which builds on the NHS England Guidance. These voluntary guiding principles include how to create the right conditions for delegation and highlight the importance of a person-centred approach and putting the person at the heart of decision-making.

December 2023

The 2014 NHS England document “Guidance on Direct Payments For Healthcare – Understanding the Regulations” has been updated this month.

There’s a fair bit been changed and added, and the changes have all been really helpfully highlighted within the document. It’s also been updated to reflect the introduction of Integrated Care Boards which replaced Clinical Commissioning Groups in July 2022.

This guidance is such a useful document for personal health budget holders to have and use, so it’s worthwhile having a read to familiarise yourself with the changes that have been made to it.

The updated document can be found here:

NHS England Guidance on Direct Payments for Healthcare – Understanding the Regulations

December 2022

We ran a free workshop in September for people with lived experience of disabilities. The aim of the workshop was to teach people how to tell their stories most effectively.

The storytelling workshops are a part of a larger programme that we’re creating. The larger programme is designed to help more people with disabilities make change in their own lives. To do that, we need to gather examples of people with disabilities living their life the way they want to. This is so that people can see what might be possible, and begin to imagine having more choice and control in their own lives.

The workshop was open to people with disabilities who have created a positive change in their own lives. It might be that they’d changed where they live, or how they live, or that they’ve taken control over a part of their life that they had no control over before.

We shared the most essential things to consider when planning, creating and delivering your story in the first workshop. We then gave people an opportunity to return for a second workshop to practice telling their story.

The impact of the workshop

We’re delighted to report that 100% of participants told us that they felt more confident about telling their story after attending the first workshop. Feedback from the first session was overwhelmingly positive with participants saying:

“It was honestly one of the best workshops I’ve been on in quite a while. The pace was spot on, I liked how the content was split between the different facilitators so we heard a mixture of voices, the slides were engaging and easy to process, and it felt like we went on a journey, that flowed, from start to finish.”

“The tips and tools that you gave were really clear and I haven’t heard it explained like that before.”

“I know that everything that I learnt from you all yesterday will give me the confidence to tell my story in a much more powerful and concise way, to hopefully make more of an impact through the messages I’d like to share.“

“I have a much better understanding of how to prepare to write my story and the importance of taking that times, the questions to think about, and the most impactful way to structure it.”

84% of participants chose to come back to the second session to practice telling their stories in small groups and to share and receive feedback.

Who are we?

We are a small group of people who’ve come together because of a shared commitment. We want to see more people with disabilities having the same opportunities in life as people without disabilities. There are four of us from different parts of the world and with a range of life experiences. It is our common values and drive that have brought us together.

Individually, we are Robyn Chappell and Rita Brewis from peoplehub, Carol Blessing from Cornell University and Niki Stevenson from Facilitation Leadership Group.

Robyn is leading our work and has lived experience of disability. She sustained a spinal cord injury in 2006 and has needed 24 hour care since. Finding ways to have choice and control over who provides her care, and how her care is provided, transformed her life. She is driven by a strong dedication to inclusivity and is passionate about the difference that having choice and control can make in people’s lives, as it has her own. Robyn has worked in co-production for many years with a range of organisations. She has contributed to national health and care policies and guidance, working and governance groups, workshops and training sessions and has presented at events both around the UK and internationally. Robyn joined peoplehub as a Director in early 2020.

Rita has a life-long commitment to improving support across health and social care. At the heart of her work is the pivotal contribution of individuals and their families, integrated with the perspectives of professionals and commissioners. Her approach is to encourage developments which focus on the whole person in their social context – working with people’s strengths and skills as well as addressing health or care needs. She has worked independently, and within Local Authority, Voluntary Sector and Health Service settings; including as a Director of Mental Health Commissioning, Senior Service Development Consultant and as an Approved Social Worker. Rita co-founded peoplehub in 2012 and remains a Director.

Carol is a Master Social Worker with over 30 years in the field of disability services in both direct practice and management capacities.  In 2000, she joined the faculty at the Yang-Tan Institute on Employment and Disability in the School of Industrial and Labor Relations at Cornell University, where she leads system’s impact projects aimed at supporting the full inclusion of people with disabilities to be recognized and respected as contributing citizens in typical community life.  Recognizing that disability is part of the human condition is at the heart of the Yang-Tan Institute’s work. Additionally, Carol is the North American coordinator for Citizen Network International – a global movement dedicated to rights based social policy.

Niki maintains a strong commitment to people’s self-determination and the right of everyone to live a life of full contribution and citizenship in their community.  Her Masters of Social Work led her into long-term involvement in developmental services and independent living.  She has worked extensively in assisting people to create alternative living options, as well as employment, volunteering and community engagement opportunities.   After more than 20 years at a developmental service agency in Ontario, Canada, she currently runs Facilitation Leadership Group which provides training, mentoring and consultation for independent facilitators, people with lived experience of disability, families and community groups.  She is also a learning partner of Citizen Centered Leadership Development with Carol Blessing.

Further workshops and opportunities

If you’re interested in taking part in any further storytelling workshops that we run, please get in touch with us at hello@peoplehub.org.uk and we’ll be sure to let you know about upcoming opportunities.

If you’re a provider organisation looking to learn about storytelling, or training for the people you work with, do get in touch and we can chat further about how we can work with you and/or your organisation.

September 2022

Through a Newcastle University research project run by people with lived experience of receiving personal health budgets, a new website has been launched today: www.mycarebudget.org

People that receive a Personal Health Budget for themselves, family members or friends, can find themselves running a care team with little in the way of support for the day-to day needs of administering and managing paid carers. In fact, this is true for anyone running a care team at home no matter how it is funded.

This website is a new, free, repository of templates and staff policy documents. So far the website has over 70 examples that can be downloaded – all of them useful for anyone that holds or is gaining a care budget, especially if it used to employ staff. No need to sign in to browse. Just sign in if you want to download, all you need is your email address – no credit card or any other personal details required.

All the documents come from people with lived experience of running a care budget. And, the website has been created with people with lived experience. There’s no corporation, health authority or charity operating it. Although formed and funded out of a research project, the site is a standalone offering. 

www.mycarebudget.org is a wiki – so it grows by people adding to it.  All the input is reviewed before being published, so people can have confidence in what appears there.

Have a look and pass on this news. The more people that know about the website, use it, add to it, change it, the better. If you need to know more, then have a look at this page on the website.  

You can also make contact with the site creators in any of these ways to find out more:

Wiki website: https://mycarebudget.org/mediawiki/index.php/Special:WikiForum

Wiki email: contact@mycarebudget.org

Wiki Twitter: @mycarebudget

Wiki Facebook: https://www.facebook.com/mycarebudget.org

September 2021

78% of respondents said they were extremely likely or likely to recommend a personal health budget to someone else.

The full report from the 2019 personal health budget survey, which was commissioned by NHS England and executed by Quality Health, is now available.

419 respondents shared their experiences of personal health budgets, integrated personal budgets and personal wheelchair budgets. People were overwhelmingly likely to recommend a personal health budget/integrated personal budget to somebody else, and a high proportion of people felt the care planning process worked well.

The report highlights some key areas for improvement, including the number of people who weren’t able to choose the option they wanted to manage their personal health budget, and the number of people who said that it was difficult to find more information on personal health budgets.

You can read more about the survey results, and download the full reports from both the 2018 and 2019 surveys from Quality Health here: https://quality-health.co.uk/personal-health-budgets-survey/

March 2020

The “right to have” a personal health budget has been extended to include people eligible for Section 117 after-care in mental health, and people in receipt of NHS wheelchairs (who have the right to a personal wheelchair budget).

People eligible for NHS Continuing Healthcare and children and young people’s Continuing Care have had a legal right to a personal health budget since 1st October 2014. Following a public consultation, the legal rights have now been extended to include these two new groups of people.

New Guidance on the legal rights to have personal health budgets and personal wheelchair budgets.

The NHS Long Term Plan states that “we will accelerate the roll out of Personal Health Budgets to give people greater choice and control over how care is planned and delivered. Up to 200,000 people will benefit from a Personal Health Budget by 2023/24.”

The legal right to have a personal health budget is intended to support Clinical Commissioning Groups to deliver on this aim, enabling people experiencing some of the most significant long-term health conditions to exercise greater choice and control, and to enhance independent living in the community.

By extending the legal right and by providing guidance documents, the aim is to increase the numbers of personal health budget holders. NHS England recognise that many people included in these new rights will have had limited opportunities to exercise choice and control over their health and wellbeing prior to this right.

December 2019

NHS England has launched Universal Personalised Care – the action plan for rolling out personalised care across England. Personalised care will benefit up to 2.5 million people, giving them the same choice and control over their mental and physical health that they have come to expect in every other aspect of their life.

Importantly, a member of the NHS England Personalised Care Strategic Co-production Group, Robyn Chappell, was invited to participate at the NHS England Public Board, to speak about what the policy meant to her, as someone with lived experience of a personal health budget. Her presence and input were important as a public representation of the shift in relationship at the heart of personalised care: people with lived experience of long-term health conditions and disabilities move to becoming valued partners and active participants, rather than the passive recipients of health care. This is the first time that anybody with lived experience has been invited to speak at the NHS England Public Board.

Universal Personalised Care: Implementing the Comprehensive Model

“For many years the NHS has talked about the need to shift towards a more personalised approach to health and care. A one-size-fits-all health and care system simply cannot meet the increasing complexity of people’s needs and expectations.

The NHS Long Term Plan is clear the time has come to give people the same choice and control over their mental and physical health that they have come to expect in every other part of their life. As well as being morally the right thing to do, a growing body of evidence shows that better outcomes and experiences, as well as reduced health inequalities, are possible when people have the opportunity to actively shape their care and support…

This shift represents a new relationship between people, professionals and the health and care system. It provides a positive change in power and decision making that enables people to feel informed, have a voice, be heard and be connected to each other and their communities.”

January 2019

Hearing from people who have real, lived experience of having a personal health budget, helps people take the leap into something new, so peoplehub and NHS England have created a way that personal health budget holders can share their experiences with each other through social media.

On 9th May 2018, peoplehub, in partnership with NHS England’s Lived experience team, successfully launched #myPHBstory at an exciting event for people from across the country, who kick-started the twitter activity. 

Where does this idea come from?

In 2017, NHS England commissioned an independent survey of how personal health budgets were being implemented. This was completed by nearly 400 people who held a personal health budget and people who were considering a personal health budget.

• 83% of the people who already had a personal health budget said they found out about them through a non-professional route.
• 54% of people who didn’t already have a personal health budget said that more than anything else, they wanted to hear other people’s personal health budget stories when applying.

This hashtag has 3 aims:

• to connect people who have a personal health budget;
• share images of what’s possible with a personal health budget;
• start to build a community of experience independent of any organisational structure.

How can you join in the discussions and stories?

#myPHBstory is live and is the space for sharing personal health budget stories. Here you will find people with personal health budgets describing how their lives have been changed for the better.

Need to know who to follow? Look through the tweets in the timeline, if anything takes your interest, reply or follow that person to keep track of their story.

Please join us in the #myPHBstory space – see you there!

May 2018