Carers (health and wellbeing needs in South Tyneside)

• Unpaid Carers are an integral part of life. Unpaid Carers are holding families together, enabling loved ones to participate within the community whilst at the same time making an enormous contribution to society and saving the economy an estimated £132 billion per year.
• Recent polling published by Carers UK has suggested there could now be as many as 8.8 million carers in the UK, compared to 6.3 million carers recorded in the 2011 Census.
• People are living longer with illness or disability meaning there is a greater demand for care. Whether it is 24/7 or just a few hours per week, caring can have a huge effect on people and how we live our lives.
• Every day 6,000 people become carers. Many don't know how or where to get help which can be socially isolating and detrimental to health. Whether someone you love is taken ill or has an accident, or if your child is born with a disability, caring can creep up unexpectedly and encompass your life. ^[i]
• The shape and sustainability of our health and care system are understandably in the spotlight. Too often missing from this debate is the role family and friends play. It is frequently forgotten or, perhaps worse, taken for granted that the majority of care provided does not come from the NHS or from care homes. It comes in the form of unpaid care which relatives, friends and neighbours provide.
• As the future funding and service models needed in the health and social care system are debated, the support that unpaid carers need to provide care without putting their own lives on hold must be at the heart of these debates.^[ii]
• Health and Social care staff are in a unique position to identify those who are in a caring role and direct them to support. This is a key priority for carers along with having the right information and equipment to enable them to care well and enabling them to benefit from regular breaks from caring. The recently published National Carers Action Plan sets out plans to develop quality standards for carer friendly GP practices in England and build on positive initiatives such as Carer Passports in hospitals and the work of John's Campaign.
• These initiatives are improving understanding of the needs of carers in some areas, and among hospital staff in particular, but an overarching duty across Local Authorities, reinforced within the NHS Five Year Forward View^[iii], is to identify and support carers, which has the potential to embed consistent and systematic identification of carers.

• Many services in the UK have reached crisis point, with unpaid carers facing the consequences of austerity on local budgets.
• The two-year delay in publishing the Green Paper on Social Care in England is of concern. The results of the 'State of Caring 2019' survey show clearly why system-wide reform is needed to ensure carers are properly supported and able to have a good quality of life alongside their caring responsibilities.
• The number of people aged 65 years or over who are caring has grown from 1.4 million to potentially over 2 million. This is a 43% increase from 2011 to 2019. Improving support for carers whether it's practical or financial must be at the heart of how we address our ageing population.
• Carers' support comes with high personal costs. Many carers are suffering from loneliness and social isolation, need support to help them stay in work, and are facing their own health problems as a result of their caring role.
• A continual theme throughout Carer Groups in South Tyneside is the need for more respite services to enable breaks from caring.
• According to the UK Census 2011 around 1 in 9 workers in the UK have caring responsibilities but polling from 2019 suggests that this may be closer to 1 in 7.  This means there could be around 10,000 people in employment with caring responsibilities in South Tyneside.  If the rate of carer per employee continues to rise, South Tyneside will have an estimated 1 in 4 workers who have caring responsibilities by 2031.
• Young Carers miss on average 48 days of school due to bullying because they care for someone.
• Engagement levels in support for ages 18 - 25 years are low.
• Carers from from ethnic minority backgrounds are not well represented in South Tyneside.

Below is a list of recommendations in relation to gaps in service provision:

Recognition and Awareness

• Raising awareness of unpaid carers amongst health and social care professionals.
• Building communities where carers are recognised understood and valued.

Information advice and guidance

• Information is tailored to carer's individual needs.
• Information is consistent, up to date and easy to access in a range of formats.

Systems that support carers

• Greater promotion of a carer's right to an assessment of their needs.
• The local offer for carers is clearly communicated through a pathway of support.
• All diverse carer communities are considered.

Good quality and reliable services

• Ensure we have a range of services available that can promote carer health and wellbeing and support them to build and maintain their physical and emotional resilience.

Supporting young carers

• Ensure all young carers and young adult carers never have to provide inappropriate or excessive care.
• All young carers and young adult carers receive the support they need to achieve in education, move into employment, enjoy their childhood and maintain their own health and wellbeing.
• Support young carers as they transition into adulthood.

Working carers

• Develop 'carer friendly' employers.
• Find innovative ways and solutions to support working carers and those wishing to return to work.
• Create greater awareness of Working Carers in the private sector.

Technology

• Explore potential for digital solutions. Below is a list of recommendations in relation to gaps in service provision:

Recognition and Awareness

• Raising awareness of unpaid carers amongst health and social care professionals.
• Building communities where carers are recognised understood and valued.

Information advice and guidance

• Information is tailored to carer's individual needs.
• Information is consistent, up to date and easy to access in a range of formats.

Systems that support carers

• Greater promotion of a carer's right to an assessment of their needs.
• The local offer for carers is clearly communicated through a pathway of support.
• All diverse carer communities are considered, i.e. ethnic minority groups.

Good quality and reliable services

• Ensure we have a range of services available that can promote carer health and wellbeing and support them to build and maintain their physical and emotional resilience.

Supporting young carers

• Ensure all young carers and young adult carers never have to provide inappropriate or excessive care.
• All young carers and young adult carers receive the support they need to achieve in education, move into employment, enjoy their childhood and maintain their own health and wellbeing.
• Support young carers as they transition into adulthood.

Working carers

• Develop 'carer friendly' employers.
• Find innovative ways and solutions to support working carers and those wishing to return to work.
• Create greater awareness of Working Carers in the private sector.

Technology

• Explore potential for digital solutions.

Carer Health and Wellbeing

• The impact of caring on carers' physical, mental and psychological health is well-documented. However, the evidence indicates that the relationship between caregiving and health is neither linear nor causal, and typically the impact is mediated by a range of factors. These include:

• The intensity of care (carers providing at least 20 hours of support a week are at greater risk)
  • Being a co-resident carer, spouse carer and / or female
  • The number of competing demands carers face (e.g. the simultaneous demands of paid employment and other family responsibilities alongside caring)
  • Individuals' coping skills and resources, and the support they - and the cared for person - receives from other family members, the wider community and formal services.^[iv]
• According to the 2011 Census, almost 4 million of the UK's carers care for 1 - 19 hours each week, whilst 775,000 provide 20 - 49 hours and 1.4 million provide 50 hours or more unpaid care.^[v]
• There is also strong evidence of a trend towards individual carers providing more hours of care per week. The numbers caring round the clock (i.e. for 50 or more hours or more each week) are rising faster than the general carer population - an increase of 25% in the last ten years compared to an 11% rise in the total number of carers.
• According to the Personal Social Services Survey of Adult Carers in England 2016 - 17, over a third of carers (36%) are caring for over 100 hours a week.
• However, the impact of caring is not just dictated by the number of hours of care provided. If a carer is working full-time, combining caring with looking after young children, or having to travel long distances to provide care, then even having to provide a few hours of care a week can have a serious impact on their life.
• The pressures of caring can take a toll on carers' physical and mental health. The 2011 Census shows that, in England and Wales alone, almost 390,000 carers report being in bad health.
• Carers Week research from 2018 found that 6 out of 10 people (61%) said their physical health has worsened as a result of caring, while 7 out of 10 (72%) said they have experienced mental ill health.
• This impact is often exacerbated by carers being unable to find time for medical check-ups or treatment, with two in five carers saying that they were forced to put off treatment because of their caring responsibilities - unable to trust or find suitable and affordable replacement care.
• This information was echoed by the 2019 GP Patient Survey which found that carers were more likely to report having health problems compared with the general public, as was also found in the 2018 survey. Carers are more likely to report having a long term condition, disability or illness - 63% of carers compared to 51% of non-carers. In addition 63% of carers reported that their condition led to trouble with day to day activity compared to 58% of non-carers. This difference was even higher for carers, who care for more than 50 hours a week, 71% of whom reported having a long term condition, disability or illness.

Working and Caring

• There has been an increasing policy focus on carers and employment matters in recent years, highlighting the need for greater 'carer awareness' by employers and the need for carer-friendly workplaces. The role of assistive technology in supporting carers has also received greater attention.
• Caring can have a long-term impact on ability to work, as a loss of skills, knowledge, experience and confidence make returning to work when caring ends extremely challenging. Evidence from Carers UK's Caring and Family Finances Inquiry indicated that former carers, who are of working age, remain significantly less likely to be in work than non-carers of working age. The loss of earnings, savings and pension contributions can mean carers face long-term financial hardship into retirement.
• A new public polling from YouGov plc, commissioned by Carers UK, looks at the impact the ageing population is having among those who are juggling work while providing unpaid care, how the world of work needs to adapt and the consequences if it does not.
• Some of the key findings from the research are:
  • The number of those juggling work and care appears to be far higher than previously thought - around 4.87 million (compared with 3 million in the Census 2011). This is one in seven of all workers, compared with the previous figures of one in nine workers.
  • The number giving up work to care has increased from 2.3 million in 2013 to 2.6 million, a rise of 300,000 people; nearly a 12% increase.
  • Nearly half a million people (468,000) have given up work over the past two years as a result of caring. This equates to around 600 people every day. Those over the age of 45 were most likely to have given up work to provide care.
  • There are lower numbers of people juggling work and care in the private sector (13%) compared to the public sector (19%).
• Carers managing to juggle work and care describe having to forgo promotion or they miss out on job opportunities because they cannot increase working hours or move to take up a new position.

Loneliness and Social Isolation

• Carers often report becoming isolated as a result of their caring responsibilities. Carers often attribute this to a lack of understanding about their caring role as well as leaving paid work and being unable to take time off from caring resulting in losing touch with friends, colleagues and family members.
• In addition to direct discrimination as a result of the condition of the person needing care, the
• Equality Act 2010 also recognises that carers can face indirect discrimination as a result of their association with disability.
• In 2013 our State of Caring survey of carers who were more likely to be caring for over 50 hours a week highlighted how many carers care alone, without support - with 37% saying they cared without any support from services or from friends and family, and a further 29% who cared with support from friends and family but none from services.
• In 2017, State of Caring survey results showed that 4 in 10 carers said they had not had a full day off from caring in over a year and 25% had not had a full day off in the last five years.

Young Carers/ Young Adult Carers

• A young carer is someone under 18 who helps look after someone in their family, or a friend, who is ill, disabled or misuses drugs or alcohol. It is estimated that there are about 700,000 young carers in the UK.^[vi]
• There are estimated to be at least 376,000 young adult carers in the UK aged 16-25, according to census figures. Many young people find early adulthood difficult with the responsibilities that caring brings, this time in life can be even tougher. Many young carers face significant barriers and obstacles in education and wellbeing.
• The Carers Trust^[viii] has outlined some key facts about young carers below:
  • 68% of young carers are bullied in schools.
  • Young Carers miss on average 48 days of school due to bullying because they care for someone.
  • Young adult carers aged between 16 and 18 years are twice as likely to be not in education, employment, or training (NEET).
  • 56% of young adult carers in college or university were struggling because of their caring role.
  • 45% of young adult carers reported that they have mental health problems.
• In June 2020 Carers Trust^[ix] asked children and young people aged between 12 and 25 about their experiences of caring during the pandemic, 961 responded.  Key findings included:
  • 40% of young carers and 59% of young adult carers say their mental health is worse since Coronavirus.
  • 67% of young carers and 78% of young adult carers are more worried about the future since Coronavirus.
  • 66% of young carers and 74% of young adult carers are feeling more stressed since Coronavirus.
  •  69% of both young carers and young adult carers are feeling less connected to others since Coronavirus.
  • 11% of young carers and 19.7% of young adult carers report an increase of 30 hours or more in the amount of time they spend caring per week.
  • 58% of young carers who are caring for longer since Coronavirus are spending on average ten hours a week more on their caring responsibilities. Among young adult carers the proportion is even higher at 63.6%.
  • 7.74% of young carers and 14.94% of young adult carers who responded to the survey, said that they are now spending over 90 hours a week caring for a family member or friend.

Ageing Population with Complex/Long Term Needs

• The number of people in the UK aged 85 or older who require round-the-clock help to eat, dress, wash and go to the toilet will almost double over the next 20 years, research has suggested, highlighting the explosion in social care needs.
• An estimated 446,000 of over-85s will have "high dependency" care needs by 2035, up from 233,000 in 2015, and equivalent to 10% of all men and 20% of all women aged 85 and over, according to a 2019 study.^[x]
• Overall, more than 1 million people aged 65 or over will require intensive social care assistance by 2035, up from 783,000 in 2015, it predicted, with increasing numbers of people living into old age with multiple long-term conditions.
• Those who have dementia and at least two other major health conditions, such as obesity or diabetes, will double over the next two decades, it estimated, suggesting an extra 500,000 people will need complex forms of care.

Carers from minority ethnic backgrounds

• Children who come from an ethnic minority background who care for ill or disabled relatives are more likely than other young carers to be isolated from support services, a Barnardo's report reveals;^[xi]
• New research from the children's charity reports that young carers from minority ethnic backgrounds are missing out on their childhoods because of the additional responsibilities and stresses they have to deal with.
• Barnardo's research, based on interviews with BAME young carers and practitioners found:
  • Many young South Asian carers were far too often being relied upon as interpreters, relaying technical and deeply personal medical information between patients and doctors, which can lead to misdiagnosis and increased anxiety within families.
  • The concept of a young carer is unfamiliar to many, as helping your family and extended family is often expected.
  • Often families do not want agencies involved as there is a deep mistrust of social services, or authorities and they are fearful of their families being split up.
  • There is stigma within many communities in acknowledging mental health, disability issues and seeking support.
• According to a report by SCIE^[xii], carers from a minority ethnic background are less likely to access support services and can become socially isolated. Possible reasons include concerns from carers about language and cultural appropriateness but also assumptions made about carers and cultural aspects of caring from those commissioning and providing services.
• The Census 2011 data indicates that a smaller proportion of the BAME population provides more care than the white British population.  However, the BAME population is much younger and therefore less likely to have older parents or other relatives needing care.
• Analysis by University of Leeds has, in the past, suggested that, when age is accounted for, BAME families are more likely to provide care for older or disabled loved ones. The NHS Information Centre's Survey of Carers in Households found that BAME carers are more likely than white carers to provide support for at least 20 hours a week (56% compared to 47%).^[xiii]

Sandwich Carers

• A report from the Office for National Statistics (ONS) says more than a quarter of such "sandwich carers" are suffering from depression or stress. "Sandwich carers" look after their elderly parents and their children.
• There are 1.3 million people in the UK with such multi-generational caring responsibilities, say researchers, with many feelings ignored and undervalued. The ONS says the numbers in this "sandwich" generation, often in their 40s and 50s, are being increased by a combination of longer life expectancy and women tending to have children later in life.^[xiv]
• But the report warns of the hidden pressures being carried by these mid-life carers - with warnings that they can be worn down emotionally, physically and financially.
• The majority of carers in this "sandwich generation" are women - and almost half of these women feel that they cannot work as many hours as they would like.
• For those with more than 20 hours per week of caring, the ONS says a third are experiencing some kind of mental health problems, which might be stretched out over many years.
• They risk becoming isolated, running out of money and being constantly under pressure - while trying to juggle between responsibilities of care, work and their own relationships.

• The table below shows figures from the 2011 Census, demonstrating the number of people providing levels of unpaid care per week in South Tyneside.^[xv]

Table 1 - Number of people providing unpaid care (2011 Census)

• The population in South Tyneside was approximately 148,100 people at the time of the 2011 census; by 2019 the total population increased to around 150,300 and increase of 2.2%.  
• In 2011, around 7,400 carers provided more than 20 hours of care per week.  Aligned to the population growth rate, that figure has now risen by approx.150 people which equates to approximately 5% of the South Tyneside population being at risk of health issues due to their caring roles. 
• In South Tyneside (2015 Carers Survey):
  • The majority of carers, 449 (73%) are female
  • The most common age group is still 55 to 64 - 176 (29%)
  • The vast majority of carers are white - 574 (97%)
• From January 2018, the Council embarked on a new way of working in Social Care, which is based on the strengths of the individual and focuses on the outcomes they want to achieve. This is called Let's Talk Together.
• Changes were brought into the way this information is recorded, moving away from traditional assessment methods and fitting people into services, using the '3 Conversations Model.'  At stages 1 and 2 of the model this is recorded as a conversation record. It is only when stage 3 is required that this is recorded as an 'assessment' (where the level of support required is not available through community resources and more formal services are required). The new model allows for a more enriched conversation with the individual to focus on early intervention, prevention and independence.
• Previously all cases and joint assessments were recorded in a Self-Assessment Questionnaire (SAQ) document, these accounts for the higher figures in 2016 and 2017. The SAQ assessment is now only used where formal provision is required; this is at stage 3 of the '3 conversation model' as mentioned above.
• The same approach is applied to Carers - where a carer is identified, a strengths-based conversation takes place to connect the carer with community resources. Where it is identified that the carer has Care Act eligible needs and these needs cannot be met by support to the cared for person, this is then recorded as a carer's assessment and a personal budget to meet those needs is agreed.
• We would therefore expect to see a drop in the number of formal assessments being recorded as we embed the new way of working.
• Using some of the key findings above as a gage to correlate against local assessment data. Appendices Fig 1 reinforces the current status of carers receiving services from Adult Social Care within South Tyneside.
• Between 2015 and 2018 more than two thirds of Single Carer assessments were on females (See Appendices Fig 2)
• The age group statistics in relation to Carer Assessments (2015-18) show that 55-64 still remains the most common age group. (See Appendices Fig 3)
• When comparing this data the following information should be taken into consideration which explains the significant drop in figures: From January 2018, the Council embarked on a new way of working in Social Care, which is based on the strengths of the individual and focuses on the outcomes they want to achieve. This is called Let's Talk Together.
• Changes were brought into the way this information is recorded, moving away from traditional assessment methods and fitting people into services, using the '3 Conversations Model.'  At stages 1 and 2 of the model this is recorded as a conversation record. It is only when stage 3 is required that this is recorded as an 'assessment' (where the level of support required is not available through community resources and more formal services are required). The new model allows for a more enriched conversation with the individual to focus on early intervention, prevention and independence.
• Previously all cases and joint assessments were recorded in a Self-Assessment Questionnaire (SAQ) document, these accounts for the higher figures in 2016 and 2017. The SAQ assessment is now only used where formal provision is required; this is at stage 3 of the '3 conversation model' as mentioned above.
• The same approach is applied to Carers - where a carer is identified, a strengths-based conversation takes place to connect the carer with community resources. Where it is identified that the carer has Care Act eligible needs and these needs cannot be met by support to the cared for person, this is then recorded as a carer's assessment and a personal budget to meet those needs is agreed.
• We would therefore expect to see a drop in the number of formal assessments being recorded as we embed the new way of working.
• Appendices Fig 4 displays the number of referrals, January 2017 - September 2019, from South Tyneside Adult Carers Service (STACS). STACS became an independent entity in 2017 and completed a transfer of 141 Carers onto their new system, which is reflective within the figures for 2017 / 18.
• Further analysis of the referral data shows;
  • 97% of the referrals are White British;
  • 63% of the referrals are either married, in a civil partnership or in a relationship;
  • 11% of the referrals are either single, windowed or separated;
  • 55% of the referrals reported having no disability;
  • Approx. 20% of the referrals reported having Mental Health issues, depression or anxiety;
  • Approx. 20% of the referrals reported having mobility or arthritis;
  • 79% of the referrals reported having no social worker support, with 18% reporting they have and the remaining percentage not notified;
  • 83% of the referrals reported caring between 19-50+ hours per week, with the remaining 17% caring 1-19 or unanswered

Table 2: SCTACS Referrals by Employment Status

• North East Commissioning Support (NECS) provides further analysis in relation to demographics by Carers per area based on GP (General Practitioner) location. Data Warning - It should be noted that due to the nature of the data collection, these figures may not be 100% accurate. Due to information governance requirements numbers less than 6 have been suppressed in the report.
• Data extracted from the GP carers register correlates with the assessment data in which the predominant age of carers within South Tyneside being aged in their 50s and 60s (Appendices Fig 5), however those in aged under 60 are significantly less likely to be a carer per head of population (Appendices Fig 6).
• Further analysis also provides insight into proportion of GP registered patients who are cares in each practice and Primary Care Network (PCN).  (Appendices Fig 7 and 8)
• The Adult Social Care Survey showed that in 2019/20 just 27.1% of carers that responded had as much social contact as they would like, while this is lower than England's 32.5% it is statistically similar (See Appendices Fig 9)

Young Carers

• There is estimated to be 700,000 young carers in the UK today. This accounts for roughly 1% of the UK's population. This percentage transposed into South Tyneside population of 150,000 interprets to approximately 1500 young carers living locally.
• It is clear that low numbers of carers in the 18-25 age groups are engaging in support and this is evident in the number registered with Humankind and the number in Social Care who have had a carer's assessment.
• In South Tyneside, there is a service dedicated to providing support for young carers in the borough. The Service has been operating since 1 April 2019 however information has been submitted to provide a snapshot of the current status;
• The assessments completed by Humankind from April to September 2019 show a more equal split in relation to gender, to that of the adult carers. 53 assessments completed in total (30 female, 23 male). A large proportion of young carers are white British with 98% of the total and only 2% being of people from minority ethnic backgrounds.
• 100% of the young carers assessed were referred to South Tyneside TEN (a non-commissioned carers service in South Tyneside) for additional activities.
• It has been identified, and reflected within the high level priorities, that more needs to be done to engage with carers aged 15 to 25 years. Engagement levels are very low as young carers' transition into adulthood and this is part of the reason why the new young carers' service has been commissioned up to the age 25 years old. 

• Further analysis shows:
  • The assessments completed show a 70 / 30 percentage split between young carer location, with South Shields being the predominant area and the least amount coming from a combination of Jarrow, Boldon and Hebburn.
  • There appears to be a clear split between referrals sources, with social workers, TEN, schools and parents being most likely and Children's Services, Early Help Services, Key Project and CYPS being least likely.

Mental Health Concern

• Mental Health Concern currently provides support to approximately 100 carers. The carers are provided with 1:1 support and have access to variety of groups and services including a Women's Group, Men's Group, Peer Support and an Out of Hours service. There are currently 51 carers deemed active with the service.
• Out of the 51 active carers, approximately 63% are female and 37% male.
• In comparison with the assessment data, the age range distribution was consistent throughout South Tyneside.

Carers Allowance

• Figures collected in November 2016 showed 2530 South Tyneside residents had claimed Carers Allowance, compared to figures in 2018 which highlighted an increase to 3270 (29%).
• On average, South Tyneside is above the national / regional average with 2.7% claiming Carer Allowance, in comparison with national figures of 1.7% and regionally 2.5%.

• ​​​Recent research from the Health Foundation shows the spending gap between England and other nations widening with public spending on care for older and disabled people being much higher in Scotland and Wales than in England. In particular, the two-year delay in publishing the Green Paper on Social Care in England is of deep concern. The results of the 2019 'State of Caring' survey show clearly why system-wide reform is needed to ensure carers are properly supported and able to have a good quality of life alongside their caring responsibilities.
• The unmet needs of Carers within South Tyneside have been collated through various sources including;
  • The Carers Strategy Group (which is a group of applicable partners within South Tyneside including the Local Authority, NHS, Third Sector and Carer representation);
  • The National Carers Action Plan analysis (which is a regional piece of work conducted in-line with the Government's call for action on carers);
  • National guidance;
  • Focus Groups;
  • Surveys;
  • Local data.
• The following statements express the unmet needs of Carers within South Tyneside;
  • Carers have identified the need for more respite services to enable breaks from caring.
  • Carers would like access to a befriending service that can meet demand.
  • Carers have identified the need for more group support services in accessible locations.
  • Carers have identified the need for more peer support services.
  • Carers have identified the need for training on the use of assistive technology.
  • Carers have identified the need for more flexible options for employment.
  • Young Carers have identified the need for help with education opportunities.
  • Young Carers have identified the need for better links to Mental Health services.
  • Professionals have identified the need for greater links to the private sector.
  • Professionals have identified the need for greater use of technology.
• It is clear from the evidence provided that carers from minority ethnic backgrounds are not well represented within South Tyneside. Due to the lack of information about carers from this background, it is unclear the demand for this type of service which highlights a need for future exploration.

• According to Census figures from 2001 to 2011, the number of Carers within the United Kingdom has grown at a rate of 11% increasing by over 620,000 to 6.5 million in just 10 years.

• The 2011 Census stated there is an estimated 16,740 People who provide over 1 hour of care per week. Incorporating the growth rate attributed to the increase between 2001 and 2011, of 11% in 10 years, equates to approx.;
  • 18,581 carers by 2021 (Short Term);
  • 19,603 carers by 2026 (Medium Term);
  • 20,625 carers by 2031 (Long Term).
• In turn, this also translates to approx.;
  • 5320 carers working over 50 hours per week 2021 (Short Term);
  • 5585 carers working over 50 hours per week 2026 (Medium Term);
  • 5905 carers working over 50 hours per week by 2031 (Long Term).

• At the time of the 2011 Census it was estimated that around 1 in 9 workers in the UK had caring responsibilities, at this time around 65% of the England and Wales population were aged between 16 and 64, there were 3.9 working age people for each of those aged 65 and over.  During the same period there were 3.5 working aged people in South Tyneside for every person aged over 65.  
• Polling from 2019 suggested that this may be closer to 1 in 7.^[xvi]  Based on 67,300 estimated employed in South Tyneside during January-December 2020 (Annual Population Survey, ONS) this would mean almost 10,000 people in employment with caring responsibilities in South Tyneside. 
• By 2020 there were estimated around 3 working aged people for every person over the age of 65 in South Tyneside.
• Population projections suggest that 24% of the population will be aged 65+ by 2031, with just 59% of South Tyneside residents aged 16-64.  If projections are correct there will be 2.4 working age residents for every person aged 65+, it seems probable that an increased proportion of South Tyneside's workers will take on caring responsibilities in the coming decade.
• Projections estimate that the number of young people in South Tyneside will decline slightly over the next decade, this could mean an increased proportion of younger people will find themselves providing unpaid care.

Listed below are key services within the borough

Local

• Adult Recovery Service (Humankind) - Offers ways for local people with drug and alcohol problems to become free from their dependence.
• Age Concern Tyneside South - Age Concern Tyneside South (ACTS) is an independent, local charity working in the Borough of South Tyneside supporting people over the age of 50.  It is the largest voluntary sector organisation working with older people in the borough.
• Cancer Connections - Cancer Connections, located in South Tyneside in the North East of England, is a charity dedicated to serving individuals and families suffering from cancer and its after-effects.
• Children and Families Social Care - This service provides support with family life, mental health support, drug and alcohol services, children in care and support to children with Special Educational Needs and Disabilities (SEND) and their families. The service also provides advice to anyone who has safeguarding concerns for a child or young person.
• Community Centres - South Tyneside has a variety of Community Centres within the borough for carers to engage with others and utilise facilities.
• Humankind Young Carers Service - Supports young carers and young adult carers up to the age of 25 years and their families to reduce the impact of caring responsibilities, helping them to realise their full potential. The service is commissioned to carry out an assessment with the young carer and their family.
• KOOTH - XenZone is a provider of online mental health services for children, young people and adults. Kooth, from XenZone, is an online counselling and emotional well-being platform for children and young people, accessible through mobile, tablet and desktop and free at the point of use.
• Let's Talk Team - The team will ensure that everyone has access to information and advice which supports their wellbeing.
• Living Better Lives Resource Centre - The Community Equipment Service is based at the Living Better Lives Resource Centre in Jarrow. They have a wide range of equipment that may help to maximise your independence if you are elderly or disabled.
• Mental Health Support Teams (MHSTs) - MHSTs develop models of early intervention on mild to moderate mental health and emotional wellbeing issues, such as anxiety, behavioural difficulties or friendship issues, as well as providing help to staff within a school and college setting.
• MIND - Provide advice and support to empower anyone experiencing a mental health problem.
• PRS Inclusion Services - PRS offer inclusion services throughout the North East of England, to help disabled people live confidently in the life they choose.
• SEND (Special Educational Needs and Disability) - The Local Offer provides information for children and young people (from birth to 25 years) with Special Educational Needs and / or Disabilities (SEND) and their parents or carers in a single place.
• South Tyneside Adult Carers Service (STACS) - South Tyneside Adult Carers Service is a free and confidential carers' support service.
• South Tyneside Lifecycle Primary Care Mental Health Service -Provides mental health services to support people of all ages; Early Years 0-5 yrs, Children and Adolescents 6 - 13 yrs, Young People 14 - 17 yrs, Adults 18 + yrs.
• South Tyneside Mental Health Carer Support - Works with people who are caring for someone with mental health problems in South Tyneside.
• South Tyneside TEN - Provides a range of IT training, and also job search support in South Tyneside.
• TEN Young Carers Service - support young people and their families to reduce the impact of caring and ensure that young people have access to the same opportunities as their peers and can achieve their full potential.
• Tyne and Wear Fire and Rescue Service - Creating safety within the community.
• Welfare Support Service - The Welfare Support Service is the first point of contact for money advice in South Tyneside.
• WHIST (Women's Health in South Tyneside) - Improve the health, wellbeing, education and quality of life of women aged over 16 years old living in South Tyneside, irrespective of age, class, sexual orientation, ethnicity or disability.

National

• Age-UK  -  Older Person's service within the Community
• Alzheimer's Society - United against Dementia. Their mission is to create a society where everyone affected by dementia is supported, accepted and able to live in their community without fear or prejudice.
• Citizen's Advice - We can all face problems that seem complicated or intimidating. At Citizens Advice they believe no one should have to face these problems without good quality, independent advice.
• Diabetes UK - Leading the fight against the UK's biggest and growing health crisis - sharing knowledge and taking on diabetes nationally
• GOV.UK - LAP (Lasting Power of Attorney) - You can make decisions on someone's behalf if they appoint you using a lasting power of attorney (LPA).
• Job Centre Plus - Jobcentre Plus is the part of the Department for Work and Pensions which delivers working-age support service in the United Kingdom.
• MENCAP - Improving the lives of people with a learning disability and their families now, and fighting alongside them for a better future.
• National Careers Service - provides information, advice and guidance to help people make decisions on learning, training and work.
• NHS website - The NHS website (www.nhs.uk) is the UK's biggest health website with more than 43 million visits per month, with the goal to be a world-leading health information service putting people at the heart of everything we do.
• Parkinson's UK - The charity that drives better care, treatments and quality of life
• Stroke Association - provides specialist support, fund critical research and campaign to make sure people affected by stroke get the very best care and support to rebuild their lives.
• Timewise Jobs - Timewise Jobs is a jobs board specialising in part-time jobs and roles that are open to flexibility, for people with skills and experience.
• Turn2Us - Turn2us is a charity that helps people living in poverty in the UK and Ireland. Turn2us provides information and support about welfare benefits and charitable grants through an accessible website and a free phone helpline

• In line with the Care Act 2014, local authorities must provide information about care and support services for people and their carers, including:
  • The types of care and support available
  • How to access care and support, including eligibility criteria
  • How to get financial advice about care and support
  • Local safeguarding procedures and how to raise safeguarding concerns or make a complaint
  • Rights and entitlements to assessments and care and support services
  • Personal budgets and all the options for taking a personal budget - for example, local authority managed, Individual Service Fund or direct payment.
• SCIE (Social Care Institute for Excellence) provides guidance in relation to support for carers which enhances evidence to the needs identified throughout this document. Listed below are some of the links and resources;
  • House of Commons Work and Pensions Committee: Employment support for carers
  • Local Government Association: Meeting the health and wellbeing needs of young carers
  • NDTi: Spotlight on a Carer's Journey
  • Carers Trust: Commissioning for Carers Key Principles for Clinical Commissioning Groups
  • Think Local Act Personal: Making it Real
• The overall principles stipulate:
  • Recognise that each person who uses services is an individual. Use each person's self-defined strengths, preferences, aspirations and needs as the basis on which to provide care and support to live an independent life.
  • Support people to maintain their independence. This means finding out what people want from their life, and providing the support and assistance they need to do this.

The views expressed from carers in South Tyneside correlate with a national report from Carers UK in 2019 entitled 'Carers at Breaking Point - Making the Case for Carer's Breaks in England', which Helen Walker, Chief Executive for Carers UK, intimates...

"...This research report builds on Carers UK's State of Caring 2017 report which found that 4 out of 10 carers (40%) said they hadn't had a day off for more than a year. The survey also found that carers who hadn't taken a break from caring within the last year were more likely to report that their mental or physical health had suffered as a result of caring. When asked about what would make the most difference to improving their health and well-being, regular breaks from caring was the most popular choice.

Quality really matters for carers and the people they care for - worry, poor experience and an inability to find the right care because the provider market is collapsing all impact on carers' ability to take a break."

• The full report can be accessed at:
  • Carers UK: Carers at breaking point

• Further context is provided by NHS England and NHS Improvement, whose paper entitled 'supporting carers in general practice: a framework of quality markers' reinforces awareness and recognition of carers within the Healthcare sector.
• The paper offers a series of practical ideas that have been developed in partnership with carers, primary care teams and other key stakeholders. Collectively, these provide a framework for improving how general practice can better identify and support carers of all ages, and set a clear ambition to:
  • Improve carers' health and promote positive wellbeing;
  • Reduce carer crisis and family breakdown;
  • Reduce unwarranted variations in carer support, and;
  • Meet demand more appropriately and better manage demand on service.

• The Carer's Action Plan acted as a catalyst during the development stage of the Carers JSNAA, which highlighted that the views of Carers within South Tyneside were not well represented.
• A thematic questionnaire was produced which aligned to the themes derived from the Carer's Action Plan and the annual 'State of Caring' national survey. The following Carer Groups / Forums were consulted:
  • South Tyneside Adult Carer's Service (STACS) - Hebburn Carers Forum
  • South Tyneside Adult Carer's Service (STACS) - Boldon Carers Forum
  • Mental Health Concern Carers Forum
  • South Tyneside Adult Carer's Service (STACS) - Parent Carers Forum
  • Humankind Young Carer's Service - Young Carers Forum

Below are the views / themes expressed during the focus groups:

Recognition of Carers

• Carers still feel that they are not fully recognised in society and have difficulties in the following areas;
  • Inconsistencies with GPs; no priority for appointments, referrals to support services differ in priority for each practice.
  • Private businesses lack recognition of carers which adds to daily stress e.g. banks, utility tend to not listen to carers when dealing with issues for their cared for person.
  • Data Protection barriers.

Information and Advice

• Carers feel that Information and Advice access can be challenging and have difficulty in the following areas;
  • Information is not consistent across different services, so the carers don't always get to find out about what support is available.
  • There is not enough 1-2-1 support, peer support groups in good locations.
  • Online resources on the Council's website can be difficult to navigate.

Assessments

• Carers feel that they don't have enough knowledge about the assessment process and have difficulty in the following area;
  • Assessment reviews are not managed well with carers reporting gaps in service of 2 - 3 years.
  • Lack of knowledge about assessments and what is available has led to a fear that support will be removed if they establish contact.
  • Lack of respite options for cared for and carer, especially referring to Mental Health.

Employment / Financial Wellbeing

• Carers feel there is a lack of understanding about their roles within organisations and have difficulty in the following areas;
  • Needs of cared for have become too great so impossible to work and care without having severe impact on the carer.
  • Difficulty getting the cared for to accept outside help.
  • Benefits system too stressful and complicated.
  • Perception that employers think they can't rely on you.
  • A lot of parent carers can't work but still have to pay for everything e.g. dental, prescriptions, eye tests etc.

Technology

• Carers feel wary of technology and have difficulty in the following areas;
  • Carers predominantly would like face-to-face contact.
  • Cost implications of using devices to access the internet.
  • Fear of using technology due to lack of understanding

Health and Wellbeing

• Carers feel their health is affected by caring and have difficulty in the following areas;
  • High anxiety worrying about cared for, struggle to switch off.
  • Lack of relaxation.
  • Weight loss.
  • Physical and Mental Health suffers.

Loneliness and Isolation

• Carers feel they have difficulty in the following areas;
  • Friends don't understand their situation and eventually drift away.
  • Struggle to commit to friendships which leads to a lack of enthusiasm to try forge relationships
  • Time acts as a barrier to social inclusion.

Ideas for future provision;

• Greater awareness and promotion of carers within the private business sector including deeper understanding of caring responsibilities.
• Forms of ID for carers.
• Continuity of care with named professionals throughout carer's journey.
• Increased access to information in relation to diagnosis and support, for Parent Carers specifically.
• Greater awareness of support across the borough for carers.
• Information packs for carers detailing support services and FAQs.
• Enhanced accessibility for carers, not just online resources.
• Carer policies standardised within employment which includes local carer involvement.
• Access to training for employment.
• Assistance to better understand the Benefits system.
• Classes to help achieve qualifications in the use of Technology that are time flexible.
• Innovative solutions to respite.
• Enhanced Befriending services.
• More peer support and groups.
• Greater partnership work within the borough between partners to increase offer for carers.

• Prior to the Focus Groups, a survey was distributed to local carers throughout South Tyneside in 2018. A number of organisations assisted with collation of the qualitative data required. The information below provides an overview of the results;
  • 61% of respondents said they had received support to assist with their caring responsibilities;
  • Support predominantly consists of support groups, family, friends, local authority assistance and self-support;
  • A Key asset to help carer continue their caring roles consisted of having a fair amount of respite and support in the workplace;
  • Easier access to information and facilities;
  • Out of hours services;
  • Holistic support and advice within 1 place;
  • Health professionals being more helpful with signposting;
  • Innovative ways to help, use of assistive technology;
  • Increased respite;
  • Education Health Care Plan process to be more clear and easier to follow;
  • Better access to Mental Health support;
  • Domestic help for older carers;
  • Increased opportunities to socialise;
  • Increased opportunities to communicate with other carers.

• Members of the public were canvassed for views on carer awareness at three key public locations across South Tyneside during October 2019. The aim was to identify hidden carers as well as assess and understand the knowledge that both carers and non-carers have of support and services available. Below are the results:
  • 56 people were approached for their views.
  • 62% of the respondents were female and 38% male.
  • 36% of the respondents were aged 70 - 79 which eclipsed the second highest age category of 50-59 by 20% more.
  • School and employment may have been the factors between the age differences in respondents as people aged 0-49 made up 21% compared to 79% who were aged 50+.
  • 30% of the respondents were identified as carers, of which 70% knew where to get support.
  • The main support services identified were Social Service, Age Concern and Carers Support Organisation. However, almost a quarter of respondents did not know.

• When Non-carers where they would go or signpost someone for help and support they responded

• When carers were asked where would they go for help and support?

• [i] Carers UK: Why we're here
• [ii] Carers UK: State of Caring report
• [iii] NHS England: Commissioning for Carers
• [iv] Social Care Institute for Excellence: Impact of Caring
• [v] Carers UK: Facts about Carers 2019 (PDF)
• [vi] Young Minds: Looking after yourself: Young Carers
• [vii] UK Community Foundations: Young Carers awareness day
• [viii] Carers Trust: Protecting Young Carers from bullying
• [ix] Carers Trust: Our survey on the impact of Coronavirus on young Carers and young adult Carers
• [x] The Guardian: Social Care needs for over 85s predicted to double in next 20 years
• [xi] Barnardo's: BAME Young Carers struggle to get right support
• [xii] Social Care Institute for Excellence
• [xiii] Carers UK: Facts about Carers 2019 (PDF)
• [xiv] BBC: Overstretched 'sandwich carers' trying to help parents and children
• [xv] Office for National Statistics: Census 2011
• [xvi] Carers UK: Facts about Carers 2019 (PDF)
• [xvii] NHS England: Supporting Carers in general practice: a framework of quality markers

Last Updated: August 2021