Improving Support to Informal Carers in Community Health Newham

Thana Narashiman, QI Communications Assistant interviewed Anthony Edwards, an Occupational Therapist (OT) working at ELFT and also a full-time carer to his late wife. The interview is based on Anthony’s incisive report which exposed the gaps in provision of care and support provided by various services. This resulted in a QI project in the Community Neurology Team.

What was the genesis for this project?

During my role as a full-time carer for my late wife, who battled a brain tumour from 2012-2014, I identified a number of gaps in the provision of services by Acute, Community, Hospice and Social Care staff. All of the staff were very caring and dedicated, however the effectiveness of the hands-on care I provided was compromised mainly due to lack of guidance and hands-on training for the health related care tasks I carried out; and also because it was difficult to navigate a complex Health and social care system. It was the family’s wish for my wife to be cared for at home. My experience as a both an Occupational Therapist and a full time carer led me to compile this report; and it laid the framework for a Quality Improvement (QI) project.

Joanne Raphael, John Kauzeni, Rozi Hamilton, Charan Saduera and Maloles Munoz-Cobo

What was the impact on you personally as an Informal Carer?

Due to the gaps in services, my own physical and mental health was affected and that of our young children. More importantly it had some impact on the comfort and dignity of my wife. I felt that the care I was providing as an informal carer could have been safer, more effective and more dignified had the gaps in services been identified earlier.

What were the identified service gaps?

No signposting of emotional/psychological advice/input during diagnosis to both patient and family; No guidance to carer regarding medication, preventing pressure sores and managing falls or managing seizures; The absence of a key worker or co-ordinator for carer or patient which manifested in perceived disjointed care and advice; No advice regarding self-referral for Local Authority Carers Assessment / Financial Advice (Benefits and Pensions) which would have assisted on social aspects.

Was it easy to navigate the patient pathways?

I have many years’ experience as a professional health worker, which enabled me to self-advocate and navigate the myriad health and social care systems. However, I feel that most patients, carers and families would be unable to navigate the current complex health and social care pathway systems, and advocate and co-ordinate care well for their loved one.

What was your QI proposal?

I decided to form a multi-disciplinary QI Project group and also managed to secure the participation of another “expert by experience” carer who had personal experiences of caring for an adult son with complex mental health needs. The aim of the project was mapped as listed below.

Who was your QI Project Group?

Our multi-disciplinary group comprised of , The Community Neurology Team, Physiotherapist, Health and Social Care Navigator, our local People Participation Lead (PPL) , Community Matron, Palliative Care Occupational Therapist ; and member of a Governance Team. And of course other carers as part of the philosophy of engagement with both service users and carers though our Working Together Groups. The experiences collated from within the group and with working with service users and families resulted in our main change idea for this project: “Support Informal Carers (unpaid/family carers) through improved assessment of their needs so they are better equipped to care for their loved one.”

Could you please expand more about improving “needs” assessments?

In physical health for family carers there are very few standardised holistic assessments forms to assess needs.  There is one example with UK Palliative Care-The Carers Support Needs Assessment , although within mental health and dementia services greater strides have been made.

How did you improve on the assessment of carers in physical health areas?

In order to better assess Informal carers’ Support Needs we have devised an Informal Carers’ Checklist to meet the needs of informal Carers of patients in Community Health Newham. We have drawn on project member’s professional experience, and their experience of being family carers; and good practice which is now clearly stipulated in policy document from: The NHS England Commitment to Carers Document (2016).  This requires CCGs (Clinical Commissioning Groups) to commission services that address and improve the emotional, physical, and educational, employment, leisure needs of Informal Carers.

Why is this assessment important for carers?

This is important as many Carers experience high levels of isolation; depression; stress, physical ill health; injury; and some find it hard to maintain or resume social networks, employment and leisure activities. Our discussion with informal carers via a confidential survey suggested that there are additional issues that needed to be considered like accessing services like Community Dentists and Opticians.  Moreover, access to leisure and social activities and employment were equally important, but were currently not fully addressed. The report’s recommendations were provision of good quality access to practical and emotional support with professionals sharing information and decision making with carers.

How did you further enhance the checklist?

The involvement and input of carer members in our project group has greatly enhanced the scope of our checklist in potentially meeting Carers Needs notably with the addition of a number of extra checks/questions to ascertain carers support needs:

“Would the carer benefit from an assessment for respite care for their loved one?”

“Access support and guidance for accessing other services such as Community Dentists, and Community Opticians?”

“Advice on managing and attending medical appointments for your relative/loved one?”

“Advice and support related to leisure and social activities; and /or employment?”

Our draft Informal Carers Checklist is currently being piloted over a two month period with 10-15  informal carers of stroke patients in our Community Stroke Team with baseline measurements recorded for satisfaction before and after the pilot. We are also measuring the confidence levels of the multi professional staff within the Team (EPCT) to support the holistic needs of informal carers.

You can learn more about this project here

This project’s Life QI code is 100791. It was also presented at the 2018 annual Quality Conference. Find out more here.

If you are part of ELFT, you can also access the Community Health Newham, Adult Services Carers Handbook here

Informal Carers’ Checklist – Newham Community Neurology Team

The Informal Carers’ Checklist was created to meet the needs of informal Carers of patients in Community Health Newham. It is currently being piloted over a two month period with 10-15  informal carers of stroke patients in our Community Stroke Team with baseline measurements recorded for satisfaction before and after the pilot. We are also measuring the confidence levels of the multi professional staff within the Team (EPCT) to support the holistic needs of informal carers.

Please click on the image to access the document.

How is Community Health Newham involving a wider range of people in QI

Since Starting Quality Improvement work, our Community Health Newham Directorate has increasingly engaged staff, external agencies and other wider groups of people to come together and work to improve their services. Watch this mini documentary, explaining the strategy driving this achievement and the impact it has had on their directorate.

Video: How is Community Health Newham involving a wider range of people in QI

Since starting Quality Improvement work, our Community Health Newham Directorate has increasingly engaged staff, service users, carers and external agencies to come together and work to improve their services. Watch this mini documentary, explaining the strategy driving this achievement and the impact it has had on their directorate.

Visit our YouTube channel to watch the full video.

A Carers’ Perspective on Quality Improvement: A personal story

Thana, QI Communications Assistant, interviewed Zhenreenah; a carer and expert by experience client in August 2017, about her abundant passion and energy for engaging with QI Projects at the Trust. She shared her expert advice in this personal story.

Zhenreenah

Carer | Expert by Experience

(Pictured with ELFT CEO Dr Navina Evans at the People Participation Awards)

Are you involved in any QI (Quality Improvement) projects currently? If yes, please could you share your story.

I am very passionate about Carers and based on my personal experience, I am committed to sharing my expertise to improving the service and Quality Improvement is the way forward.

One of the key issues for me was that Carers were not aware of what was happening in both the Trust and with Social Services in Newham. As carers we access services from both organisations. Services were in transitions and it was very challenging and we carers felt that there was a need to keep people/carers updated.  There was a gap and we tried to address it.

One of the concerns was that previously integrated services were fragmented, as for example when social services were “disconnected” from East London Foundation Trust services (ELFT) without any communication with clients like us Carers. It was very confusing when it all suddenly disappeared including engagement with us carers’ group as we worked closely with both organisations.

Therefore, one of the early QI projects was the compilation of a carers’ pack which started as a mini project with a small group of passionate carers to address the confusion.

What was the project aiming to do?

Following suggestion from former ELFT staff, the need for a QI carer’s group was discussed and this led us to come together as carers to collect and share information about local services which we felt would be useful in our role caring for our families.

The key aim of the project was to collate the information about services which spanned various stakeholders so in essence we wanted to bridge the gaps in services so information was easily accessible.

We wanted to compile a reference document which clearly stated what carers were seeking and how best to access services. This led to the creation of the Carers’ Information Pack and quarterly Newsletters related to Mental Health in Newham.

What was your motivation to be part of the project?

I have a passion for carers. Many carers like myself are sometimes left in the dark and they need a voice to share their opinions. I now share my enthusiasm with others carers during the ELFT monthly induction sessions for new staff members joining the Trust.

This Carers’ Information Pack can provide information and help find carers who we don’t currently reach and also identify “hidden” carers who are not registered in the system as such. Many are just too busy caring, for their loved ones and have no clue that they’re Carers and in need of a statutory Carers assessment to acknowledge this.

It is estimated that there are currently approximately 24,000 carers. (Editor’s Note : This is not a definitive audited figure as we don’t have the authorised data) in the local community in Newham but we don’t have the number of carers who manage mental health within family members. I have tried many times to collect the information but have yet to succeed.

I am very grateful that previous ELFT staff member and Carers UK (an independent charity) guided us in forming this group. However the newsletter only goes out to 10 Carers who are member of the Carers Group and that is a low circulation considering there are over 24,000 carers in Newham.  It would be good to get the newsletter to more Carers, the mental wards in Newham and for Carers who are “hidden” (not registered as Carers) and busy working.

How would you describe your experience of being involved in this QI project?

The project progressed well initially with a couple of meetings. However, as time progressed I found it more difficult to attend meetings at ELFT’s Head Office alongside my other carers’ commitments which can arise suddenly and unexpectedly.

Because of hospital appointments and other issues going on, the enthusiasm started to fizzle out and I was emotionally drained and the meetings were impacted. I tried my best to keep asking how the project is going and for me to attend, but found the project was almost finalised.

I feel Carers should be given more freedom to shape their projects within the group and then come together and meet staff for brainstorming at agreed schedules. One of my recommendations would be to encourage carers to find time when they can catch-up to access project developments outside of formal meeting times designated by ELFT staff and whether meetings can be localised in their own areas and then to rotate venues.

This will allow carers to decide what works best for them in view of their own commitments.

What are your thoughts on the value and importance of QI work within ELFT?

Based on my experience, I feel it is very valuable as I like to see positive changes.

I have many ideas (Editorial note : Zhenreenah has compiled over 51 QI ideas for this interview) and with my abundant positive energy, I want to see services develop for the benefit of service users and carers, as well as staff. My aim is to help people get better and recover and move on.  For us carers, emotional wellbeing is also very important.

To me, it is good that service users engage with their treatment and use opportunities within the Trust to access training, prevent isolation and help people to move on; understand their own mental health, and see what the trust has to offer, e.g. voluntary jobs, training, etc. etc. I see this as gentle nudges to help vulnerable people regain confidence.

My experience of the Service User & Carer QI training is that it generated energy and ideas amongst participants, but we felt that guidance as to what to do next was not obvious and we felt slightly unsupported.

Service Users & Carers like me have many ideas to improve services but following the training it would be helpful to be directed towards people providing local designated QI support who can help us develop our QI ideas. We need more guidance as to what the process is or I worry that people will lose the motivation.

What advice would give to other project teams on how to engage service users/carers effectively in QI projects?

I would strongly urge that we need to be very diligent when we engage with vulnerable people who we are asking to engage and contribute. Let’s not forget the 6 “C” for compassionate care. (Editorial Note : https://www.england.nhs.uk/6cs/wp-content/uploads/sites/25/2015/03/introducing-the-6cs.pdf)

We need proper support system in place and be mindful not to treat service users/carers as “numbers” but to listen well and provide the necessary support so that they feel comfortable to engage. To me, it is very important to be aware that service users/carers can be on medication and so we need to be mindful of this and for us to treat people with respect and dignity.

Equally, when we encourage service users/carers to apply for opportunities/positions, we need to consider providing post interview feedback and coaching if for example they are not successful as it can have a detrimental impact on their emotional wellbeing.

We must develop the procedures to encourage, engage and prompt people to progress. If service users/carers don’t feel confident, they will lose the trust in staff and in the system. This will be sad loss for QI projects when you are trying to engage our experts by experience, service users and carers.

Is there anything else you would like to share with others across ELFT about your experiences that haven’t yet been mentioned?

Once Service Users & Carers have engaged and are contributing towards improvement projects I feel it’s important to provide them with access to the resources needed to do the job. I am ready to start a project and would like to know how to start one up please.

For example, myself and other carers have invested our time in compiling and editing our Newham Mental Health Carers Newsletter. However, we were not initially provided with access to computers and resources related to printing and distribution but some ELFT staff kindly volunteered to assist us and distribute our first edition.

I would like to use my concerns about the needs of people in supported housing. I’ve also recognised that we need to do more for people with mental health issues during their stay in physical health hospital environments. I would like to use my energy and expertise to help people make improvements in these areas but need guidance. I would like to know how  are people supported when starting a project and it fell on the way side? What is the procedure to get them back on board?

I would also like to thank all staff that has helped me and other carers since joining the trust. The training, the awards, the services, and all of the other engagements.

Editorial Note

I have always been very impressed with Zhenreenah’s energy and passion to suggest improvements to services.

As a carer myself, I can resonate with many of the issues articulated in this article and I hope it gives you an insight into the invaluable and compassionate work of Carers.

The opportunities to engage both within QI Team and People Participation offers many opportunities like that provided to me to assist the QI team with my expertise. By sharing the unique stories we can collaboratively improve the services by exposing the gaps and integrating the various pathways to improve the client journey.

As Zhenreenah mentioned, we need to be mindful always to treat service users/carers with compassion and to provide the support to guide then forward at their own pace as it is easy to be myopic and focus too much on statistics and charts.

The human element – the person – should always remain at the core and form the epicentre of the 6 “C” Quality of Care mantra.

Improving Support for Informal Carers

This projected presented at the 2017 Annual QI Conference aims to support informal carers in Community Health Newham through improved assessment of their needs so they are better equipped to care for their loved one.

A day in the life of Dr Ben Braithwaite

Read time: 3 minutes

Could you give us a brief summary of your role and what a typical day at work is for you?

As clinical director for Community Health Newham I lead on quality and governance for our adult community health services. This includes our district nursing and community therapy services, musculoskeletal physiotherapy, learning disabilities,  and another dozen or more very specialised clinical teams. CHN also provides inpatient care on three wards at East Ham Care Centre.

I’ve been doing this job for a year and haven’t yet had a typical day! But taking today as an example, I chaired our QI forum, where we celebrated the successful closing of a medicine safety project on Cazaubon ward, and talked through ideas for five new projects. I spent some time finalising a serious incident report about a housebound patient whose pressure ulcers had worsened while we were looking after him, making sure that we’d identified ways to avoid similar harm coming to patients in future. I looked at our incidents and complaints data for the past week. And this afternoon I’ll be at the project board for EMIS, which looks after the roll out of the EMIS electronic clinical system to most of the CHN services.

What do you enjoy most about your role?

It must sound as though I spend a lot of time looking at things that have gone badly, but I love being able to celebrate the positive, hard work that people in CHN are doing all the time.

What do you do in your day-to-day work to support us to continually improve?

I try to ask “why?” as often as possible. Why do we always do x this way? Why did y happen? I aim to sound like a precocious toddler! If I can get colleagues to look at their work with a bit of perspective, we can often identify ways to cut through inefficiency and waste, so that we have more time and energy to care for our patients.

Do you think it is important for the leaders of this Trust to embrace quality improvement? Why?

Absolutely – and it’s really clear that the board and the exec team are focused on supporting QI throughout the Trust. While we know the best ideas for improvement come from people at the front line, it’s the job of the Trust’s leadership team to create the space in which those ideas can be tested and developed.

Do you have a story of something inspiring that has occurred through QI?

My GP colleague, Lili Risi, who works with the rapid response and extended primary care teams, led a project to spread the use of a “handy” framework for making holistic patient assessments. Lili, Abi Olowosoyo and Maloles Munoz-Cobo presented their project at the International Conference on Integrated Care in Barcelona, where they received a lot of positive feedback for their innovative approach.

What do you see as the biggest challenge to embed quality improvement, and what can we do to tackle this?

Being distracted by the “urgent” from what’s important: we need to make sure always to keep sight of our improvement aims, even while we’re dealing with immediate problems and crises.

How do you see the role of QI in the Trust as we move forward?

No prizes for predicting that we’ll increasingly be working in partnership with other organisations, in new and unfamiliar models of care. ELFT can bring a QI mindset to these partnerships, encouraging testing, measurement and rapid change so that we can make the most of these new opportunities.

Finally, could you sum up what quality improvement means to you and why you feel it is so important to us as a Trust to embrace.

ELFT’s focus on QI was the reason I applied to work here. I agree with Paul Batalden from the IHI; everyone in healthcare really has two jobs when they come to work every day: to do their work and to improve it. And ELFT is one of the best places in the NHS to do that.

Active QI Projects – April 2020

This is the monthly report generated from Life QI, showing all active projects within all the directorates.