16 May 2018

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

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