• To validate the register of carers in the practice - NICE guideline [NG150] recommendations 1.2.1-5
• To assess the needs (physical, psychological, emotional, financial etc.) of the carers
• To assess the impact of COVID-19 on their role specifically
• To offer practical help where indicated and signpost them where appropriate

The roles and responsibilities of the unpaid carer were traditionally overlooked by the wider health care system in the UK. However, in May 2014, NHS England published an official framework that highlighted the lack of support and a need for better recognition of carers. It stated that carers should be considered a hugely important asset to the NHS and therefore deserve respect and support from clinicians. This ‘Commitment to Carers’ documentation set out eight priorities to improve the experiences and lives of care givers.

The fifth priority focused specifically on the primary care setting; supporting GPs to better identify carers and enhance the services available to them. These recommendations echoed much of the information presented in the guidance published by the RCGP ‘Commissioning for Carers’ in 2013, a document that contained many examples of the challenges faced by those with lived experience of unpaid caring. Although personal anecdotes can be perceived as overly emotive, in this documentation, they enhance the readers’ recognition of the need for additional support for carers. The change in consultation style due to the COVID-19 pandemic has resulted in fewer patients, and therefore carers, attending practices for consultations. As a result, there are fewer opportunities to meet carers in person which could result in the oversight of many concerns or problems. Furthermore, to mitigate risk in the early months of the pandemic, the government advised extremely vulnerable members of the population shield from the rest of society. Many carers also had to isolate and would not have had the opportunity to attend face-to-face appointments for themselves. The most contemporary evidence suggests that isolation, loneliness and dramatic change has resulted in a stark rise in mental health problems and this could be affecting carers. GPs must therefore find novel methods to reach out to carers registered with their practice to ensure that they feel supported and safe.

The recently discovered SARS-CoV-2 virus and resultant COVID-19 pandemic created many challenges for both the UK healthcare system and wider society. Social distancing, hand hygiene and the wearing of facemasks were introduced as a manner of mitigating the pressures on resources (Intensive Care Units and ventilators) while a safe and appropriate vaccination programme is developed.

In the primary care setting, there were additional changes to practice; in March 2020, GPs received specific guidance from NHS England that led to the replacement of many traditional ‘face to face’ consultations with telephone or video calls. This decrease in footfall within practices has resulted in fewer interactions between GPs and carers who would normally attend appointments to support their dependents.

It is possible therefore that during this novel pandemic the changing needs of carers are being overlooked by clinicians, which could lead to detrimental outcomes within this highly valued cohort. This audit aims to assess the impacts of the pandemic on a cohort of carers registered with this practice and offer practical support.

This project aimed to contact all those registered as carers at the Newton Medical Centre in September and October 2020. Data collection was carried out via telephone calls over a four-week period.

An initial search of the EMIS database provided a list of individuals registered at the practice who identified as carers. This list was then searched to remove all individuals reported to no longer be caring for a dependent. Medical students attempted to telephone all 199 remaining individuals to gather data.

A timeline was agreed by those involved in data collection and analysis to ensure that outcomes from the project are reached in a timely manner. Each carer received a telephone call to ascertain data regarding their current caring status and any concerns or issues they have faced due to the COVID-19 pandemic. The carers’ responses highlighted the areas to focus on for quality improvement work that led to the implementation of changes at the practice in October 2020.

Of the 199 individuals called, 139 patients answered the call and engaged with the survey. Of the 139 people engaged with, 92 were currently carers and 47 were no longer carers and their records have been updated.

Of those currently caring, 54 described specific impacts of the COVID-19 pandemic on carers as below (themed):

1. Social isolation - 27
2. Decline in mental health - 15
3. Difficulties accessing appointments - 6
4. Lack of support groups - 3
5. Lack of respite - 1
6. Fear of COVID-19 - 1
7. Physical health concerns - 1

30 carers had suggestions for the improvement of services at the practice (see attached report for further details).

Themes from the qualitative responses and concerns were discussed in a clinical meeting and actions to address these issues have been implemented as part of quality improvement activities within the practice. Letters with relevant information were sent out to the carers.

Quality improvement is integral to progressive practice and focuses on making small scale interventions to drive change in current systems and improve patient experience. We have carried out these straightforward actions on the grounds of results from this audit and updated the patient records (General Medical Council guidance recommends that clinicians maintain accurate and up to date records).

The 47 individuals contacted that are no longer carers, have had their EMIS records updated accordingly. This will prevent repetitive and potentially distressing conversations about the deaths of dependents, thus, improving the holistic approach towards the care of patients registered with the practice.

Logistical issues raised, such as the need for increased access to appointments and better communication from the practice, were fed into a clinical meeting to facilitate appropriate interventions that align to national guidance.

There was an apparent misconception that GPs were interacting and caring for fewer patients as a result of the pandemic. This is incorrect. Practices have merely altered consultation methods where appropriate and in line with contemporary guidance. The 139 carers reached by telephone were reminded that they can still seek support and advice should they require it. Correspondence has been sent to thank those who took part in the survey and highlight the positive changes made by the practice as a result of their valued responses.

The letters provided information regarding the annual influenza vaccination scheme, access via e-consultation, telephone advice calls, limited face-to-face after triage by clinicians and support groups that have continued to help carers during the pandemic. Carers UK is an example of such support groups This charity is dedicated to giving expert advice and information to care givers. They are also passionate about connecting individuals to create a network of carers to support one another and share experiences.

The latter may provide comfort for those carers who disclosed struggles relating to the social isolation brought about by the pandemic.

Kent and Medway STP have developed a mobile app to support care workers and carers to access information to help them to deliver great quality care. In line with the local care agenda, we wanted to support people to stay as independent and healthy as possible within their own homes. Care workers and carers interact with the people they care for on a regular basis making them ideally placed to identify the small changes which can be the early signs of a problem.

The app is intended as a portable quick reference guide to support those who provide care to know what to look out for and what to do if they do notice the signs of deterioration, encouraging appropriate, timely referrals to NHS, social care and voluntary sector services. We knew from user research that both of these user groups are really pushed for time, so the app had to support them to find information and make decisions quickly on the go.

Given our aim to support people across Kent and Medway provide great quality care, we wanted to ensure the advice the app gave aligned with NICE resources. Each advice and guidance article is mapped to the relevant NICE guidance or quality standard. The app supports users to care in line with relevant NICE guidance and standards without having to access the internet or navigate to them.

Given the national context of the shortage of care workers and the growing demand for services the app also aims to support new people joining the workforce to quickly learn the basics and feel competent to care. We also have more people living with multiple long-term conditions which the app also supports. In the long term, our aim is for the app to support carers and care workers all over the country.

The Help to Care project was inspired by the Stop Look Care booklet created by Brighton and Hove CCG. Knowing that the project was addressing national issues, we wanted to build upon the success of the Stop Look Care booklet and make it an accessible resource for everyone living in Kent and Medway.

The app was designed to be free because we wanted to support consistency of practice that wasn’t dependent on commissioning decisions or budgets. We weren’t aiming to compete with or replace existing training but to complement existing practise. Whilst the care certificate is the professional standard, completion isn’t mandatory which can lead to inconsistent training standards.

In Kent only 21% of workers have completed the care certificate (Adult Social Care Workforce Data Set) and only 50% hold a relevant qualification. Similar challenges exist for unpaid carers, with only 9% reporting that they had received training as part of their caring role (NHS Digital 2018).

Stakeholders and potential users were consulted at several stages of the project. The project was initiated by a scoping workshop in July 2018 where key stakeholders were invited to attend. This helped to determine the key features of the baseline product. During product development, the app was again presented to a both a user group and a stakeholder group. Once the product was published, further engagement work was conducted.

Following publication in April 2019, further engagement and testing took place including focus groups with carers, social services teams, public representatives. The app was also presented at care provider forums and an informal qualitative study with a domiciliary care provider.

This crucial feedback enabled key changes the product before the app was officially launched. Changes included:

• The name was adapted from Help 4 Carers to Help to Care as carers reported the act of ‘caring’ was more universal and relatable than the title of ‘carer’ and better reflected the app as a self-management tool.
• The carers support guide was created, and the services section enhanced to support carers to self-identity and understand the support that was available, both locally and nationally.
• The feedback from carers has informed the development roadmap for the app. According to the 2011 Census there were 176,810 unpaid carers in Kent and Medway. Carers UK have estimated that the number of carers are likely to have increased by about 35% nationally. This also may not account for the number of hidden carers who do not recognised the invaluable support they may be giving to friends and family. Printing booklets for the entirety of this potential user base could have cost around £500,000 without considering distribution costs or issuing new versions. The app presented a scalable solution with the initial build costing less than 10% of this figure. It has also been much more sustainable as annual hosting and maintenance costs have been around 1% of the cost of printing.
• There are another 43,500 jobs in care across Kent and Medway with over 30,000 of these providing direct care to residents. Additionally, there are over 528,000 people living with long term conditions across Kent and Medway, that could be supported to manage their own condition using the app.

The project was initiated by the workforce lead within South Kent Coast CCG who developed a digital Stop Look Care e-book. The vision of bringing the product to the whole of Kent and Medway in a scalable solution was more challenging. Gaining consensus between the 8 CCGs to support the project and agree content standards was difficult. In order to gain traction, the support of Kent and Medway STP was sought. This also enabled the product to be transferred to the Design and Learning Centre within Kent County Council to support with the governance. The initial build of this app including development, testing and project management was delivered by NEL CSU for c£30,000. NHS Vanguard funding and Kent and Medway STP Local Care workstream has facilitated project delivery.

An advantage of the project dovetailing with Brighton and Hove’s project was that the topics for inclusion and the relevant NICE guidance had already been implemented. This made it much easier to ensure the guidance included on the app aligned with NICE with a strong evidence base of value within a social care setting. When new topics were proposed, such as Carers’ Support, we were able to identify the relevant guidance and included this within the governance documents. The purpose of this is to ensure the content can be reviewed in tandem with changes to national guidance.

After the initial build the project required an FTE Project Officer to manage the product. Securing this resource has ensured the product remains relevant and up to date in terms of content and facilitates ongoing promotion of the app into the delivery phase.

What our users thought:

“I absolutely love the app. It's easy to use, informative and signposts for further help. Great for carers, support workers, in fact, as a parent, would love it” Care Provider Training Manager

“I loved every bit of it especially the articles and trainings section, the navigation and font choice is superb as I read through with ease. I wish there was more content.” Social Care Worker

“It’s packed with information that’s readable and useful … the contents are attractively signposted, and it's is easy to navigate and use. The hyperlinks throughout to specialist services are particularly useful” Resident and Volunteer

The app has met is main objective of creating an app for care workers and carers which supports them to provide quality care. As part of the formative evaluation of the product, a domiciliary care provider piloted the app to help test its effectiveness. After 2-4 weeks of using the app, interviews were conducted with the staff to understand the impacts of implementation.

During the pilot study several interventions were enacted which prevented unnecessary treatment / admissions.

• Skin Damage. The pressure sores assessment tool was used to assess the red skin she observed on a client. The app prompted her to call the clients GP to book an appointment. This resulted in the early diagnosis of cellulitis which was treated without complication at home.
• Catheter Care. The catheter care guide was used to improve knowledge and resulted in more regular cleaning, reducing the client’s risk of infection.
• Mental Health. The mental health guide was used to increase confidence to facilitate a conversation with a client that was presenting with a low mood which would otherwise not have taken place. During the conversation, the Mental Health Services section was used to pass on some relevant numbers. Access to these services supported the client to get the advice and support needed and her mood improved.Despite being experienced, the staff interviewed reported the app made them feel more confident and reassured them they were deliver good quality care. Managers within the care services felt Help to Care supported them to create common standards and expectations across the workforce and encouraged staff to respond appropriately to changes in their clients.
• An unexpected finding was that the app was seen to have benefit for those living with long-term conditions because it supports self-management. During engagement activities a carer who had recently been diagnosed with type 2 diabetes highlighted the value of the app for him to manage his own condition and changes to his health. The potential of the app to support clients using inhalers was also identified. In one instance the app could have prevented, phone calls to a supervisor, 111 and the client’s GP as well as a GP appointment, demonstrating a clear efficiency saving.
• In all three examples the care worker felt that without the information, they wouldn’t have sought support from a manager or health care professional in such a timely manner, if at all, supporting lower level interventions and more efficient responses to changes in care needs.

The pilot has demonstrated the diverse ways in which the Help to Care app creates efficiency within the health and social care system and supports carers and care workers to follow NICE guidance. Following this successful pilot, the app was publicly launched on 11^th May jointly by the Kent and Medway STP, Kent County Council and Medway Council.

User testing demonstrated that some people, whilst confident to use apps, didn’t have digital skills to download it without support and would search via the internet, so we added some content and support videos to our website to support people navigating online. We’re also linking in with other projects to support digital skills and access as this is a barrier to using the app.

Every guide gives people the opportunity to let us know if it was useful or not. Our guide on continence pads has been voted most useful so far. Other popular articles include carers’ support, catheter care and the skin damage tool.

Taking an agile approach to project management has been key to enabling success. Some of the more complex features, such as a directory of services and integration with e-learning content, haven’t been able to develop as quickly and are dependent on other pieces of work. In order to overcome this challenge, the decision was made to launch in two phases. Phase one would be a baseline product which achieve the product aims of information and once the product was established, phase two will see the development of more complex features. The benefit of this approach means it is much easier to be user focused during the development phase.

However, there were some delays caused by early publication. Upon wider consultation, it became apparent that the name of the product was causing confusion about the intended audience of the and that it could bring wider benefit that originally anticipated. Having a publicly available app has been challenging for evaluation, for example we haven’t been able to baseline data before people start using the product.

Some of the biggest areas for benefits include the domiciliary care workforce, where workers are generally working alone with limited resources, and unpaid carers who again are providing care with limited support. These groups are very difficult to target as they cannot be captured through place-based evaluation. By delivering the app through the local authority it was possible to target both audiences through pre-existing relationships and build on existing forums.

The Help to Care project enables broad system improvement. By being developed a system level, it was possible to ensure all of the potential benefactors were considered alongside product development. The operational board has representation from social care and health (including local care, workforce and digital leads within the STP).

Further resources:

Help to Care promotional video 

Help to Care website 

The overall aim of the project was to reduce carer strain of carers of stroke patients in the early supported discharge team in order to increase their knowledge and confidence in their caring role in alignment with NG150. Relevant NICE recommendations are indicated below in brackets.

Within this short term aims and objectives included:

• To identify ideas for more personalised and effective carer support from the carers themselves (NICE recommendations 1.3.2, 1.6.4)

• Once an appropriate intervention was identified by the carers themselves, we aimed to co design this with the them (1.3.4, 1.3.8, 1.6.4)

• To evaluate the effectiveness of the carer intervention (1.1.3)

• To improve the opportunity for carers to consistently be able to ask questions and share any concerns with health professionals (1.3.8, 1.1.2)

• To improve the perception of carers about whether their needs had been considered by the ESD team (1.3.12, 1.1.2)

• To design a carer friendly preparation sheet for the intervention (1.3.9)

• To provide the appropriate location and timing of intervention to best meet the carer’s needs (1.3.6, 1.3.7)

• To improve targeted resources for carers and staff (1.3.12, 1.6.4, 1.6.5, 1.1.3)

• To reduce carer strain (1.5.2, 1.5.3, 1.6, 1.7)

• To improve emotional support and the well-being of carers (1.7)

• To improve knowledge and skills in the caring role (1.6.1, 1.6.4. 1.6.5)

• To increase confidence in the carer role (1.3.5, 1.7)

• Improve how carers felt about adjusting to change in their lives (1.3.5, 1.7)

• To improve education for staff in order to support carers more appropriately (1.3.3, 1.7)

• To improve collaboration of services between ESD and social services to improve access and efficiency of support (1.5.1, 1.6.10).

More than 900,000 people in England are living with the significant morbidity following a Stroke (NICE 2013). NICE (2016) Quality Standard 2 describes early supported discharge (ESD) as an intervention for adults following a stroke, which supports their care to be transferred from an in-patient to a community setting.

It enables people who have had a mild to moderate stroke to continue their rehabilitation therapy at home beginning within 24 hours of discharge. Informal carers play a vital role in the recovery of people with stroke. However, we know that discharge from hospital can be a particularly worrying time. Carer strain can be high and for some, it is possible that accelerating discharge home exacerbates this.

This initiative was inspired from research started by The University of Southampton on understanding rehabilitation burden of carers in Stroke ESD. We decided to find out more about what extra carer support may be needed for our own service. Initially the project was kick started by a £2,000 award from Maddison Product Design who ran an ideas design workshop, otherwise there has been no additional funding, solely NHS.

The resulting project has been in collaboration with the clinical audit team, with input from our clinical psychologist and social services. A baseline focus group and audit were completed with carers to establish carer perception and ideas for service development regarding improving carer support. The focus group generated ideas for improvement whilst the audit showed gaps in carer support which we then could target with intervention. We organised a follow up focus group with carers to co-design a one to one session which they had identified in the initial group. They came up with design issues which we problem solved together and we planned the session accordingly based on their needs. e.g. carers reported they wanted the session to be open rather than structured and they wanted it to be face to face in a location of their choosing.

ESD enables people who have had a mild to moderate stroke to continue their rehabilitation therapy at home beginning within 24 hours of discharge. Informal carers play a vital role in the recovery of people with stroke. However, we know that discharge from hospital can be a particularly worrying time. Carer strain can be high and for some, it is possible that accelerating discharge home exacerbates this.

This initiative was inspired from research started by The University of Southampton on understanding rehabilitation burdsen of carers in Stroke ESD. We decided to find out more about what extra carer support may be needed for our own service. Initially the project was kick started by a £2,000 award from Maddison Product Design who ran an ideas design workshop, otherwise there has been no additional funding, solely NHS.

The resulting project has been in collaboration with the clinical audit team, with input from our clinical psychologist and social services. Before the change, carer support included assessment of carer strain (using the carer strain Index) at the halfway point and the offer of a referral to social services for carer support. Education for carers was more informal and was planned as part of a patient session as indicated, but there were no stand-alone sessions for carers without the patient present.

Prior to the project, we felt that there may be an unmet need, as carers would talk about the emotional impact on them informally and also we had some comments regarding this on patient satisfaction feedback. We realised that we needed to specifically canvas carer’s opinions in order to evaluate their needs as well as their ideas to improve carer support during ESD. A baseline focus group and audit were completed with carers to establish carer perception and ideas for service development regarding improving carer support. The focus group generated ideas for improvement whilst the audit showed gaps in carer support which we then could target with intervention.

We organised a follow up focus group with carers to co-design a one to one session which they had identified in the initial group. They came up with design issues which we problem solved together and we planned the session accordingly based on their needs e.g. carers reported they wanted the session to be open rather than structured and they wanted it to be face to face in a location of their choosing.

The above objectives were achieved.

• Ideas for carer intervention were generated from the collaborative focus groups and the main intervention was chosen co-designed by carers was a one to one session with a health care professional.
• Staff had training sessions from a clinical psychologist regarding communication and dealing with distress so carers could be supported more appropriately.
• Links have been made between ESD and social services, ESD is now recruiting its own social worker.
• The post intervention audit demonstrated a significant improvement in carers feeling more supported. There was an increase in carers feeling they had enough opportunity to ask questions from 66.7% pre intervention to 100% post intervention.

The opportunity to ask questions about their own needs as a carer improved from 64.3% to 92.3%. The feeling that they had enough information about the patient's condition so that they felt confident in caring for them increased from 66.7% to 84.6%. Having enough information about rehabilitation and expected recovery increased from 60% to 92.3%. Knowing how and where to access further information increased from 60% to 92.3%.

Being able to understand information provided improved from 86.6% to 100%. Feeling that their caring needs had been considered by the ESD team improved from 83.3% to 100%. Feeling that they had been supported in adjusting to changes in their lives improved from 66.7% to 92.3%. Lastly feeling that they had been involved in ESD input as much as they would have liked improved from 85.8% to 100%.

Staff have embraced this new approach and welcomed the chance to develop their role so that carers have the opportunity for their needs to be addressed. Carers have fed back that they value the chance to voice their concerns and have their questions answered in a confidential setting of their choosing. This initiative has meant that resources can now be targeted to the topics which mean the most to individual carers.

Because we inform and provide information about the carer session at the first visit, they know that they will have the opportunity to ask questions in a slot dedicated to them and regarding the topics which are concerning them the most. This has led to improved carer satisfaction and to less “ad hoc” queries which may take place in a rushed manner when the health professional does not have as much time to answer as they would prefer.

Key learning is that involving carers was essential to the success of the intervention. This project has demonstrated that carer strain and outcomes can be improved once targeted and personalised input is provided.

Being flexible about where and how sessions are delivered is also pivotal for carers to feel comfortable so that the intervention can be effective. It would have been beneficial to have a social worker as part of the ESD team whilst this project was being undertaken. However, going forwards an opportunity has arisen for a social worker to become part of the ESD team and this should enhance knowledge around benefits, care and return to work.

Having the input from a clinical psychologist was very beneficial in planning the project but due to limited funds there is no ongoing support for further intervention. Concerns regarding emotional support were highlighted by carers as a key issue so having access to ongoing clinical psychology would be a great asset for carers.

Carers are a hugely important asset to the NHS as well as to the people they care for (DOH 2014). Too often carers do not receive the recognition and support that they deserve from the NHS (commitment to carers 2014). Informal carers also make a major contribution to society in excess of 120 billion per year, and which without this this the NHS would not be able to function (Carers UK 2014).  

The primary focus of the team was to develop a service working directly with carer’s in conjunction with the person who is being cared for (patient). The service would provide, deliver and develop a range of services for all adult informal carers from across a range of cared for situations, including support for parent carers.

The clinical nature of the team was to ensure that a credible, safe and effective service would be provided and underpinned by NHS guidelines and ensuring compliance with CQC standards and outcomes.

The team worked proactively to ensure that health screening was routinely completed and available for every carer. Each carer was offered a personalised care plan, advice, strategies and clinical interventions on maintaining their own wellbeing as an individual and in supporting the person they care for. Therefore, enabling each carer to develop their own strategies and as a result, reduce the strain of coping with their caring role.

Work with the carer includes promoting their health and wellbeing and ensuring that they have additional knowledge about the cared for person’s condition and likely care pathway, so that both the carer and cared for person achieve the best possible quality of life, relief from symptoms, and flexible proactive choices and advanced care planning about the management of the condition and caring situation. Clinicians also worked in partnership with the carer, drawing on the team’s professional knowledge and expertise, providing training and advice, signposting to appropriate statutory services, healthcare services and third sector services.

The service is focused on proactive work with a preventative focus; it is not a service that would respond directly to acute or urgent health needs for either the carer or cared for person.

The service aimed to deliver the following outcomes for carers and the people they care for:

• Improved quality of life for the carer and the person they care for.
• Improved access to information about services available for carers and the person they care for.
• Improved physical wellbeing for the carer.
• Improved emotional wellbeing for the carer.
• Increased knowledge and skill in supporting the cared for person, e.g. managing continence or administering medication.
• Improved wellbeing for the cared for person. e.g. intervention results in improved nutrition, falls prevention.
• Carers’ reporting increased resilience and strategies to maintain their own wellbeing.
• Early identification of undiagnosed long-term conditions for either the carer or the person they care for.
• Reduction in unscheduled care for the carer and/or the person they care for.
• Increased choice & control for the carer and cared for person in identifying, managing and achieving their own personalised health & wellbeing outcomes.

Caring can be a positive role and bring about many rewards. However, there is strong evidence to suggest that this role can also have a detrimental impact on the individual engaged in this role, with a significant proportion of carers reporting that the role has indeed had a negative impact on their health and that their role leaves them feeling stressed and unable to achieve a good night’s sleep (Carers UK, 2014).

One of the key strategic aims in the West Sussex Inter-agency Carers Strategy (Pillow, 2010) was to ensure better support to carers from the NHS, with the overarching local vision that carers would be supported to stay mentally and physically well and to be treated with dignity. This strategy is supported by the three local clinical commissioning groups; coastal West Sussex, Horsham and Mid-Sussex and Crawley.

Before the project started the support for carers in West Sussex was from a range of voluntary sector organisations. The change of support needed was the identified gap in the provision of clinical support available to informal carers who were undertaking many clinical tasks due to the increase of the aging population and reduction in resources provided by health and social carer organisations.   Informal carers are often undertaking tasks such as medication management or wound care that would have been considered that only a health care professional could carry out and in the past a community nurse would have supported with.

Carers often have to navigate between complex health and social care systems report they have to tell their story many times and therefore, placing carers at the heart of changes to health and social care in order to ensure fully joined up support for carers, rather than simply introducing more difficulties for them to navigate.

The NHS commitments document (2014) key facts cited informal carers who provide high levels of care for sick, or disabled relatives and friends, are more than twice as likely to suffer from poor health compared to people without caring responsibilities, with nearly 21% of carers providing over 50 hours of care, in poor health compared to nearly 11% of the non-carer population. And can also result in a decline in the carer’s ability to remain in the role and in turn may lead to the cared for person being admitted to hospital or long-term care.

The CHT is part of Sussex Community Foundation NHS Trust. The organisation is a specialist provider of community health and care services to the people of West Sussex, Brighton & Hove and High Weald Lewes Havens area of East Sussex.

There are approximately 84,000 informal carers across West Sussex and due to an ageing population and longevity this is expected to rise year on year. Long term investment in informal carers is therefore crucial to ensure that this unpaid workforce able to continue and reduce care costs across the health and social care networks.  

The priorities within the NHS’s commitment to Carer’s (2014) were revisited many times throughout the pilot phase to ensure that this benchmark was being met. This was used in conjunction with the service specification to ensure that a credible, safe and effective service is being provided

The NHS’s Commitment to carers priorities are:

• Raising the profile
• Education and training
• Service development
• Person centred, well co-rdinated care
• Primary care
• Commissioning support
• Partnership links

A health promotion model and quality of life indicators helped to shape the service provision. The team began to develop specialist skills and knowledge within community services to enhance the service they could offer carers. The clinicians undertake an individual health needs assessment including a research based mental health wellbeing score. All carers referred to the CHT had a named clinician who would lead and manage their caseload and work proactively with other organisations.

The team originally consisted of a service lead and six clinicians including a skill mix of nurses and occupational therapists.  

The referral pathway has three sources: Statutory and voluntary services as well as self-referral. The initial referral target was 25 but this was exceeded and at times doubled from month one and onwards throughout the pilot period. Carers health needs assessments were offered in a range of places to ensure that carers were given to opportunity to discuss their health without pressure and in a confidential environment.  

The clinicians would complete a health needs assessment of the carer to enable the carer to manage their own health and to develop their own strategies to reduce the strain of coping with their caring role. Within the assessment clinicians provided clinical interventions and advice including health promotion and contingency planning. The support from the team aimed help to help maintain the informal care provided. It aimed to provide expert advice to the carer as well as avoiding admission to hospital or carer crisis.

The health needs assessment is RAG rated to define if the caring situation is of a complex or non-complex nature. It is holistic, and includes physical, mental and emotional health needs and covers falls, nutritional and manual handling and contingency planning.  

Referral criteria were also agreed with the commissioners, and new documentation was developed to support this; including developing electronic systems for caseload management and reporting.

The timescales relating to new referrals was considered to be important with initial contact to be made five days from a referral being received to establish the initial assessment date and location then agreed with carer.  

Time was invested linking with key referrers such as GP’s, social services and community nursing teams. This was difficult throughout the pilot phase as convincing other multidisciplinary teams

Service mapping of the county was also undertaken and clinicians were allocated individual service areas to ensure local knowledge and consistency.

The team work proactively and in partnership with the carer and statutory and third sector organisations, drawing on the team’s professional knowledge and expertise, to provide training, advice and signposting.

The use of a RAG rated health needs assessment enabled the carer to develop their own strategies to reduce the strain of coping with their caring role. Clinical interventions and advice include health promotion and contingency planning. The support from the team is helping to maintain the informal care provided, and provide expert advice to the carer as well as avoiding admission to hospital or carer crisis.

The CHT was tasked with ensuring that carers gained additional knowledge regarding the care recipient’s condition and likely care pathway, so that both are able were able achieve the best possible quality of life, relief from symptoms, and were offered flexible and proactive choices and advanced care planning to assist them with the management and care of the care recipient.

An implementation meeting was established to project manage implementation to point of a successful “go live” service.

Based on current investment and the calculations outlined above, the CHT clearly has the potential to save local health services a significant amount in terms of physical and mental health costs. However, it is worth re-emphasising that the service is currently only reaching 1.2% of the local caring population and, based on the current service model, would require an additional investment in excess of £30 million per annum to cover all of the carers in West Sussex. This finding in itself reinforces the suggestion that there is a need for clarity surrounding the remit of the team and possible need for a triaging process prior to admission onto the service. Strong support is also given to the case for further investment (Clare D Toone 2014).

The Carers Health Team pilot project exceeded its initial aims and objectives throughout its pilot phase and a research evaluation was completed by a Public health researcher (Clare D Toone 2015).

The summary findings concluded that although initially tasked with improving the general resilience and emotional and physical wellbeing of carers over a four to six week period, the CHT has offered prolonged support to some of the most vulnerable individuals within West Sussex and may very well be responsible for the prevention of many a breakdown or crisis. They have also been responsible for increasing confidence and improving the quality of life of over 1000 carers within West Sussex, while potentially saving local health care services in excess of £2 million per year (Clare D. Toon Evidence Review Officer Public Health Research Unit 2015)

Other findings included, several participants highlighted the number of other services, which focus solely on the care recipient and the impact of this on the carer, and many emphasised the importance of having a clinical team focusing entirely on the needs of the carer, and taking a more holistic approach to the carer-care recipient situation. This was particularly noted where carers were not engaging with their GP or any other conventional health service, because this increased the risk of an acute or unplanned health episode. This may consequently leave the care recipient requiring additional assistance. Participants felt that working with carers to focus on their own health could encourage them to prioritise their own health needs.

Both carers and stakeholders described the value and importance of having a service that is carer-focused, with particular attention paid to the benefit of focusing on the health and wellbeing of the carer, rather than just the care recipient. This is a reasonably novel approach, as most traditional services tend to place all the attention on the care recipient. From a legislative standpoint, the CHT is ideally placed with the commencement of the Care Act (2014), to deliver on the key principles surrounding wellbeing, equal rights of both members of the carer-care recipient dyad to the provision of personalised services to enable the pursuance of life opportunities.

The CHT is also well placed strategically to continue to deliver key NHS and social care objectives, which will enable carers to stay healthy, and work proactively to minimise crisis intervention through resilience-building and harm reduction. Without this type of intervention, the carer may ultimately reach “breaking point”. The service may also meet Better Care Fund requirements by supporting a reduction in unplanned hospital admissions or permanent admissions. In terms of the Adult Care Social Outcomes Framework (ASCOF), the CHT may help to address measure 1A: Social Care Related Quality of Life. The CHT also works operationally with other health teams to raise carer awareness and ensure that their needs are taken into account by the local health economy at every opportunity.

The economic contribution made to society by carers is well documented, and it has been suggested that each carer contributes well over £15,000 to society per year (Bruckner & Yeandle, 2007, Carers UK, 2014, Lamb, 2014). Based on the number of carers identified by the 2011 census (Office for National Statistics, 2011), this could equate to a contribution of nearly £13 billion in West Sussex alone. Reports such as these highlight the need for both social care and health commissioners to ensure that locally focused proactive and personalised support is made available to all carers.

Financial savings associated with the CHT have been calculated on the basis of improvements to both mental and physical wellbeing of the carer (see appendix 6 for full economic modelling). Projections have been based on CHT activity data, along with a number of existing research sources (Barnet et al., 2012, Buckley, 2014, Clifford et al., 2011, Clifford et al., 2014). This research, along with data regarding various health costs, has enabled the identification of an average estimated unit cost to health organisations of managing the mental and physical health problems of carers. This includes a number of deductions to the gross values, in line with the work of Clifford et al. (2014):

• Deadweight – this deduction of 7% acknowledges that the realisation of a proportion of positive outcomes may have occurred without the support of the CHT and that some gain very limited benefit
• Alternate attribution – this deduction of 45% acknowledges that varying levels of support from elsewhere may be responsible for the positive outcome achieved

To calculate the net financial savings, the cost of the CHT is deducted from any gross savings identified. Savings have been modelled based on the expected prevalence of mental and physical health issues among the carers. It is worth bearing in mind that all costs associated with mental and physical ill health are based on research rather than actual data. It is also worth noting that the financial savings projected here are associated solely with health organisations and it is entirely possible that some benefit to social care will also be realised. Social care costs and benefits have deliberately been excluded to ensure there is no risk of duplication of the social care saving attributable to the carers using both the CHT and CSWS.

Physical health:

Based on the research outlined above, the likely prevalence of any long-term medical condition ranges from 20% to 28% (Barnett et al., 2012, Office for National Statistics, 2011). This gives the following projected financial savings per annum:

• £543 to £761 per carer
• £365,063 to £511,088 for CHT, based on an average of 56 referrals per month
• £8,148,720 to £11,408,208 if the CHT were able to reach all 15,000 registered with CSWS
• £45,847,415 to £64,186,381 if the CHT were able to reach all 84,395 carers in West Sussex

Mental health:

Based on the research outlined above, the likely prevalence of any mental health condition ranges from 39% to 82% (Buckley, 2014, Carers UK, 2014). This gives the following projected financial savings per annum:

• £1,165 to £2,449 per carer
• £782,697 to £1,645,670 for CHT, based on an average of 56 referrals per month
• £17,470,908 to £36,733,704 if the CHT were able to reach all 15,000 registered with CSWS
• £98,297,152 to £206,676,063 if the CHT were able to reach all 84,395 carers in West Sussex

It is therefore possible to estimate that, if all of the carers currently residing in West Sussex were to be assisted by the CHT, there is the potential to effect savings of up to £271 million per year. Based on the current average referral rate of 56 new cases per month, the CHT may potentially save local health services up to £2.1 million per year.

The report concluded that the most important conclusion to draw is that the team have demonstrated excellent partnership and matrix-team working to ensure the best outcomes for the carers. However, confusion over role clarity and overlap with other services may need to be addressed on a wider scale, and this discussion should include all services concerned with the wellbeing of both carers and care recipients. While this discussion may result in changes to the CHT service, the overall care and wellbeing of the carers is paramount and may be better served by the CHT focussing on a smaller sub-set of the carer population, rather than attempting to address all issues for all carers.

The CHT shared the findings of the research evaluation with other organisations locally and nationally to support the NHS’s commitment to carers and in conjunction with the acknowledgement of helping carers to stay well, and in turn this supports the sustainability of the NHS as informal carers save the NHS millions and without their support the NHS would not manage.  

The Carers Health Team Clinicians not only contributed to the service being permanent but they also won a Sussex Community NHS foundation trust Research and innovation award the same year.  

An initial challenge was the original name chosen for the team “carer wellbeing”. It was very similar to other services available to carers in West Sussex. The team agreed that “health” within the title would identify the nature of the service on offer. It was felt that carers needed to be able to associate with the name and understand that this was a new service being offered. The team has had to ensure that there is a clear difference in the service that is being offered by the CHT in comparison to the other services that available to carers; this was done through presentations and case studies.  

The CHT needed to spend time to develop their understanding of the service specifications and implementation of this within a new community service  

The team then needed to promote the service to the key stakeholders and identify how the team was different from the existing carer organisations. The team spent time linking with key referrers and visited team meetings to explain how the CHT was different and clinical nature of the role. The clear message being that we are registered health care professionals working within Nursing and Midwifery guidelines which include a code of conduct. There were many difficulties with GP’s and other stake holders during the pilot phase these included not understanding the service on offer was beneficial and the difference between this and other community teams.

Data collection was problematic as it was a very large spread sheet designed by a partner organisation and was not compatible with the software being used by CHT and therefore resulted in extra time having to be spent on gathering the data in a way that was acceptable and demonstrated performance outcomes.

Initially, there was a service specification of a time limited intervention period of 4-6 weeks. However this was reviewed on an individual basis to encompass carers with complex health needs. Some situations, including safeguarding, have meant that several cases cannot be closed and will remain on-going to ensure continuity.  

The original expectation relating to the amount for referrals received per month was 26. Carers Health team received an average of 55 per month, more than double the envisaged amount, which had an impact on the capacity of individual team members, who at times had to assist in areas of the county outside of their geographical area to ensure that all new referrals are responded to within the agreed timescales. A waiting list was avoided as the team felt that this would be detrimental to the service and possibly discourage carer from accessing it.

There have been many I.T issues including compatibility of the activity sheet and general computer problems, resulting in lost data and clinician’s time spent trying to resolve these issues. There are plans in place for the team to use system one, which is a medical records system used throughout Sussex Community Trust and GP’s in West Sussex. This would enhance the service greatly and allow not only carers outcomes to be followed up in terms reducing admissions to hospital or GP’s contact but also give continuity of care as the wider community would be aware of the input being given by the service.

The vision was to provide an efficient and knowledgeable service to carers within West Sussex which would cater to all their needs. Joint working with other carer’s service providers across West Sussex was a vital component to success and provision of a seamless service for carers. There had to be partnership working with other agencies such as Crossroads and carers support to establish one single point of contact for carers. The vision was for there to be one single assessment to be undertaken to identify the support that can be offered from all agencies. All agencies are in agreement that this is the way forward in achieving a streamlined service. This has proved difficult due to the complexities of IT, consent and information sharing agreements.

Currently, discussions are being undertaken between agencies with regards to the steps needed to be taken to achieve this vision. Suggestions relating to this include: 

• Team members sharing knowledge of their service
• Team meetings to be held jointly to encourage partnership working
• An assessment form is developed that can be shared and used by all agencies
• Formal partnership agreements

In achieving these carers would no longer need to be assessed by different agencies dependent on their needs. It would enable the capacity of team members to increase, as assessments would be shared amongst the agencies and the availability of services such as respite care may increase.

Joint working is currently under way and A “West Sussex Carers Network” has been formed to provide continuity of care to carers.

For future learning and to improve continuity and decreased overlapping of service provision every carer service, statutory and voluntary should be included in the scoping process