Implementing Clinical Support for Informal 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