Carers Engagement Report

Background

NHS Nottingham and Nottinghamshire Integrated Care Board (ICB) wanted to understand the lived experience of unpaid carers that we have not connected with before. We were keen to engage with carers who have a disability, were from the LGBTQ+ community, from an ethnic community or have a support need themselves.

The latest Integrated Care Partnership (ICP) insight report[1] highlighted the impact on carers based on national data which prompted a discussion at the ICP meeting 28 October 2024[2]. It was suggested that carers could be an area of greater focus, aligned to the existing Carers Strategy. Funding from NHS England to run a regional engagement project was utilised to hold a listening event and gather views and experiences from carers.

We proactively engaged and listened to 35 individuals via various engagement methods including, telephone interviews, community group visits and at a bespoke listening session for carers.

Key findings

• Carers have limited time to either research or attend carers groups.

• There is a lack of clarity for some carers about what support they may be eligible for and how to access it.

• Many carers expressed that they do not feel heard or listened to by professionals when addressing the needs of their cared for person. Carers feel their contribution can be overlooked and undervalued.

• Waiting times to access services are longer than carers would like.

• There are barriers to accessing respite care, including care providers not speaking the language of the cared for person or being trained in supporting people with additional needs, for example people who are neurodivergent.

• Navigating capacity can be difficult for carers. When cared for individuals decline additional support, caring responsibilities weigh heavier on the carer and respite time is scant.

• Some families have complex caring and cared for dynamics with partners caring for each other or parent carers also being cared for. Some families have complex and unique circumstances where personalised and individualised support is needed to truly meet their needs.

Next steps

The findings from this engagement work will be shared with contributors and be made available on the Nottingham and Nottinghamshire Public and Patient Insights Hub[3] to enable wider sharing of system insights and on NHS Nottingham and Nottinghamshire Integrated Care Board website[4].

Insights from the engagement activities will also support the ongoing work around the Joint Carers Strategy. This report will also be shared with the Integrated Care Partnership (ICP), a statutory committee jointly formed between the ICB and all upper-tier local authorities that fall within Nottingham and Nottinghamshire.

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[1] Microsoft Word – Oct24_ICP insight report final submitted

[2] ICP-24.03.25.pdf

[3] Introducing the Nottingham and Nottinghamshire Public and Patient Insights Hub – NHS Nottingham and Nottinghamshire ICB

[4] Current and Previous Engagement & Consultations – NHS Nottingham and Nottinghamshire ICB

Conclusion 1: Carers do not feel that their needs are always taken into consideration when putting support in place for the cared for person. Some families have multifaceted caring and cared for dynamics with partners caring for each other or parent carers also being cared for. Families often have complex and unique circumstances where personalised and individualised support is needed to truly meet their needs.

Recommendation 1: Social care providers to continue to take a whole family approach to supporting both the carer and cared for person. Look for opportunities to include a whole family approach to providing support in line with the Joint Carers Strategy, taking into consideration both the carer and cared for person’s needs. Build on plans to fully assess and record any additional support needs including physical, communication or mental health support that carers may require, considering the whole family holistically.

Conclusion 2: Not all carers are aware of where to go for support, what is available, and which benefits they might qualify for. 

Recommendation 2: Further promotion of websites such as Carers Hub and Carers Space to inform carers on how to access support. In addition, explore opportunities to link in with the development of the new Nottinghamshire Directory (planned to launch in April 2026) to ensure that support and information is accessible from this platform.

Conclusion 3: Not all carers feel heard and listened to by health professionals. And expressed that their contribution is not valued or recognised by services

Recommendation 3: Ensure carers are aware of the Carers Space for their voices to be heard via groups and forums. Raise awareness of the Carers Hub where carers can be assigned a dedicated support worker.

Conclusion 4: There are barriers to accessing respite care including care providers not speaking the language of the cared for person or being trained in supporting people with additional needs, for example, people who are neurodivergent.

Recommendation 4: Continue to endeavour to employ a diverse workforce for respite care providers to meet the needs of carers and individuals being cared for. Consider involving interpretation services to support with communication needs.

Recommendation 5: Ensure that people who work in respite services have access to training to support individuals with additional needs for example people who are neurodivergent.

NHS Nottingham and Nottinghamshire Integrated Care Board (ICB) were successful in an NHS England regional engagement project funding bid. The project had to link to one or more of 10 key principles. The principles covered in this project were:

• Involve people and communities at every stage and feed back to them about how it has influenced activities and decisions.
• Understand your community’s needs, experiences, ideas and aspirations for health and care, using engagement to find out if change is working.
• Build relationships based on trust, especially with marginalised groups and those affected by health inequalities.
• Tackle system priorities and service reconfiguration in partnership with people and communities.
• Work with Healthwatch and the voluntary, community and social enterprise sector.

NHS Nottingham and Nottinghamshire ICB wanted to gain a deeper understanding of the needs of carers, particularly those who are from the LGBTQ+ community, young, carers disabled, Black, Asian and carers from minority ethnic groups to understand more on how we can involve these underserved communities who we had not connected with before.

The overarching aim was to uphold the voice of the carer recognising their often hidden contribution to the health and care system. Local Authorities and NHS Commissioning Teams were invited and involved from the beginning and throughout the project providing opportunities to embed valuable insights into pathways and approaches, notably the ongoing work on the Joint Carers Strategy[1].

National context

The State of Caring research[2] completed by Carers UK in 2022 gathered feedback from over 13,400 individuals currently or recently providing care. These insights informed the engagement project in Nottingham and Nottinghamshire. Key insights included:

• At the beginning of the pandemic in 2020, over half (58%) of unpaid carers from Black, Asian and minority ethnic groups said they were worried about their finances, compared to 37% of White carers.
• 48% of bisexual carers and 45% of lesbian and gay carers often or always feel lonely, compared with 33% of heterosexual carers
• 27% of carers said they had a disability themselves.

The 2021 census data tells us that there are now 82,172 carers within Nottinghamshire of those 24,499 are carers who provide over 50 hours of care per week.

The census 2021 data indicated that there are 24,346 carers in Nottingham city of those, 7710 are providing over 50 hours of care per week.

Local context  

Local data captured by eHealthScope (GP Clinical Systems) documents that 52,790 GP registered individuals (4%) are carers in Nottingham and Nottinghamshire. Of the 52,790 carers, 1,910 (3%) have a first language which is not English. Furthermore, 855 (3%) of carers were either on the physical disability or learning disability register themselves. Finally, 1,430 (2%) were categorised with severe frailty according to the Quality and Outcomes Framework register.  

The above data indicates that carers are themselves at risk of health inequalities or need specific support themselves. It tells us that carers may need to access interpretation or translation services, need support with lifestyle adjustments or additional needs.

Joint Carers Strategy

The Joint Carers Strategy [3] was developed with Nottingham City and Nottinghamshire County councils, Nottingham and Nottinghamshire ICB and coproduced with carers with lived experience.

The strategy states that:

“Our vision is to support and work in true and active partnership with carers and their families for them to achieve healthy, balanced lives, to give them the confidence that they will be supported in a fair, respected and honest way by all the agencies they come into contact with.”

The principles are:

1. To work in a way that is tailored to each carer to meet their needs and support                their health and wellbeing and maintain their independence
2. To reduce isolation and health inequalities by improving access to carers who are ‘seldom heard’ or who are from minority ethnic groups
3. To ensure carers have a voice, that they are listened to and are treated with respect as people with lived experience in carer support
4. To improve the lives of all carers by everyone working together
5. To identify and support carers as early as possible 
6. To provide the right support across the health and social care system to meet the needs of all carers and the people they care for by delivering high quality services
7. To make best use of available resources in supporting carers across the health and social care system

Engagement aims and objectives

The overall objective and aim of the engagement activities were to gain a deeper understanding of the experiences of carers, particularly those with protected characteristics. The remainder of this section describes the specific approaches taken to gather views and feedback.

The following enquiry areas were pursued at focus groups, telephone interviews and included in the survey.

• What support is accessed by carers, both commissioned services and wider support such as support groups
• The reasons carers are not accessing support
• Where carers would find support for their caring role if they needed it
• What factors make the caring role challenging and suggestions for how these issues could be resolved
• What more could be done to support carers from different backgrounds
• What carers feel positive about in terms of their caring role
• Whether carers feel that unpaid carers are widely recognised and supported
• What advice carers would give to service providers to ensure they are meeting the needs of all carers

Insights and findings from the carers listening events will support the ongoing work around the Joint Carers Strategy addressing some of the above principles. Nottingham City and Nottinghamshire County Councils and NHS Nottingham and Nottinghamshire ICB leads were involved from the start with the intention to share valuable insights to support the ongoing collaborative work on the Joint Carers Strategy.

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[1] Joint Carers Strategy – Nottingham / Nottinghamshire Carers Hub Service

[2] cukstateofcaring2022report.pdf

[3] Joint Carers Strategy – Carers Space Notts

The engagement project ran from 31 January 2025 and concluded on 31 March 2025.

NHS Nottingham and Nottinghamshire ICB specifically wanted to hear from Carers who we have not yet connected with, carers from the LGBTQ+ community, from ethnic communities, carers with a disability or support need themselves. A stakeholder mapping exercise was conducted to identify community groups in Nottingham and Nottinghamshire and an invite was extended to visit groups, gather views and share the opportunity onwards to networks and contacts. A full list of stakeholders can be found in Appendix 1.

Feedback was gathered from all community group visits, a bespoke listening event, telephone interviews and an online survey. In total we engaged and spoke with 35 individuals this included 12 carers at various community group visits, 11 attendees at the listening event and a total of 9 survey responses were received. 3 telephone interviews were also conducted for individuals preferring this method of contact to share views and feedback. 

Establishing a Task and Finish Group

Representatives from 15 local organisations supporting people with disabilities, LGBTQ+ groups, people from ethnic communities and those with faith and religious beliefs were invited to be involved in two task and finish groups to help shape the carers listening events.

The task and finish group included representatives from Self Help Nottingham, Nottinghamshire County Council, Nottingham and Nottinghamshire ICB Personalised Care Team, Nottingham City Council and Heya Nottingham. The Task and Finish Group initially focussed on gathering feedback from carers from existing activity and support groups.

Community Visits 

The Engagement Team were invited and asked to join Nottinghamshire Carers at Kirkby Plaza Carers Roadshow to gather feedback.  Around twenty people approached the stand. Individuals were either already linked into services, received advice from Nottinghamshire Carers or were not carers, this also provided a networking opportunity with service providers.

Visits were made to the Carers Roadshow at Kirkby Plaza, Be Kind to Your Mind session in Mansfield, Mapperley Coffee Morning for Carers and City Carers support group. A listening event session was also held at Nottingham Central Library 18 March which included social time and a focus group.

Carers Listening Event	11 Individuals
City Carers Support Group	7 Carers
Ladybrook Community Centre	3 Carers
Telephone Interviews	3 Carers
Mapperley Carers Coffee Morning	2 Carers

Survey

An online survey was developed to hear from Citizens’ Panel [1]members who identify as carers and to offer an alternative for individuals preferring to feedback anonymously via survey, hard copies were available with other language versions produced on request.

Telephone interviews were made available for individuals preferring this method of contact to share views.

The same questions were asked throughout the different methods of engagement. All written notes taken during the telephone interviews, community group visits, listening event and qualitative responses from the survey were analysed by theme and presented collectively. Quantitative data was analysed and summarised and presented in tables within this report.

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[1] Citizens’ Panel – NHS Nottingham and Nottinghamshire ICB

The equality and diversity monitoring questions included in the online and telephone surveys were optional, not all carers participated in sharing their views and experiences in these questions.

In total, 12 individuals provided responses to some, or all of the demographic questions presented. The demographic information for this cohort is summarised below, with a full breakdown available in Appendix 2.

The majority were female 8 (66%) whilst (33%) 4 were male, all indicated that their gender matched their sex registered at birth. The age profile of respondents was those mostly aged between 40 – 64 years 6 (50%).

The majority were White British 7 (58%) and heterosexual/straight 8 (67%).

7 indicated that they had a disability, long-term illness, or health condition (86%), whilst no one stated they were currently pregnant or had been in the last year. Most were married 9 (75%), 2,17% were living with their partner and 1 8% were single.

8 indicated that they had caring responsibilities (88%). Most stated that they were Christian 4 (37%) or did not have a religion 3 (27%).

Services and support accessed by carers 

In Nottingham and Nottinghamshire there are various support groups and services available to carers. We asked carers whether they accessed any of the following services:

• The Carers Hub, which is a single point of access for information and advice.
• The Carers Space is a group bringing together professionals and unpaid carers, to share knowledge, insights and experience.
• We also enquired about whether carers attended support groups.

There was a broad awareness of the Carers Hub, most carers currently or previously attended a support group, the Carers Space was the least mentionedand a small proportion of carers did not access any of the above-mentioned support.

Limited time to access support

When asked about the reasons carers did not access carer support services, time was a prominent theme.

With carers’ time being stretched with day-to-day caring tasks, the capacity and energy to search what is available or attend support groups including online groups and services was limited. The time and day of specific carers support groups may not fit in with weekly routines. Non carer specific groups are attended by some carers who prefer a distinction from a carers support group or simply want the activity on offer, such as exercise.

If carers feel there is a possibility of being called back to their caring role, there can be a hesitancy to spare the time to go to groups.

“I am too busy for online groups.”

Awareness of information and accessing support

Knowing what was available and access to information was a barrier for some carers. Not all carers were clear on what could be accessed and to what they were entitled. If contracts change every three years, navigating the system can be difficult for carers with changes to provision, services and benefits.

We heard that carers who are older, often tend to support their loved one without accessing support. This is often due to not identifying as a carer and instinctively supporting their loved one independently of services, benefits or other support.

When accessing support services there was some lack of clarity about what was available. Some carers were unsure as to whether they had received a carers assessment or not.

Carers would like to have a one stop shop with information for both the cared for person and carers, covering all eventualities from crisis, criminal justice system, social care to everyday stress management and support opportunities such as groups and activities.

• Provide guidance on where to go for support.
• Include clear guidance on what carers can expect, what carers rights are, especially in relation to carers caring for people with mental health conditions.
• Carers would like information on how to register as a carer and carers passports, people are unsure of the difference.

Type of Support session

The type and format of support sessions that are offered to carers made a difference to attendance. It was suggested that information and advice sessions should be separate to support groups that provided time to connect and share experiences. Carers sessions that include activities were preferred by some, compared to social only groups, also an emphasis on support for the carer was important. Support groups were not always appropriate for people with social anxiety, and it was stated that groups for young carers were lacking.

“I have accessed carer support services but have found that it was all about how to best care for my relative, and I have this information now. Nobody is really interested in how supporting us as a family with caring for an elderly relative with Alzheimer’s as well as our adult son who has a disability and mental health issues.  That I have health issues myself does not seem to matter either….”

The following organisations and support were named as helpful sources, when carers needed support with their caring role.

• Age Concern
• Alzheimer’s Society
• Autistic Nottingham
• Carers Federation
• Carers Hub
• Carers support group (peers at support group)
• Disability support
• Healthcare professionals
• Improving Lives
• Support from colleagues at work
• Middle street Resource Centre
• NHS 111
• Nottinghamshire County Council Social Services
• Recovery College
• St Anns Advice Centre
• Stonebridge Centre
• Talking Therapies

Carers also sought support from other carers, friends and family. Taking part in hobbies such as piano, gardening and mindfulness were also found to be helpful relaxing activities.

Challenges experienced by carers

Experiences at healthcare appointments

When carers were asked about what made their caring role challenging, a clear theme was communication and specifically not feeling listened to or trusted enough by health and care professionals. There are demands on carers to keep professionals up to date with the needs and preferences of their cared for person, regularly having to provide the same information to different professionals. Carers found it difficult not being able to discuss more than one condition at appointments. Some frustration was felt around whether patient notes were being read in full by professionals.

During consultations, carers had experienced conclusions being drawn before the carer had finished their point. Engaging with medical professionals was difficult for the cared for person when they have had medical trauma and carers may need to advocate for their cared for person, such as making health professionals aware that needles cause high anxiety for their cared for person.

Some carers have experienced feeling as if they are interfering and being an overbearing family member. Carers can feel that they are at risk of agitating the situation. One comment stated that the system relies on people speaking up and knowing what to say to get treatment. Peer support was found helpful in learning from others’ experiences and finding out what to ask for from professionals, what to say and what is available for carers.

One carer suggested that providing training to health and care staff on the value of the caring role could be helpful. Carers also stated that it would help if services were educated on the different conditions, for example to strengthen the understanding of Autism and Dementia. There is recognition of some understanding and awareness.

Open days at GP surgeries offering health checks were praised. It was suggested that a smaller event could be held with a few support services working together to provide an open day and promote the benefits of annual health checks and offer training to carers in some aspects of care for those who are interested.

Continuity of care

Lack of continuity of care was raised as a concern affecting the experience for both the carer and cared for person. Carers are experiencing their cared for person receiving treatment from several different health professionals. Within community services, one carer saw 28 different nurses in 3 months.

Waiting times for services

Waiting times to access services was also a theme with general comments about waiting times needing to be reduced. Care packages were mentioned as taking a long time to be put in place. One individual stated that they waited 6 months for a referral to social services. Another individual waited 6 months for a carers assessment.

There was also a comment about the efficiency of placing the social prescribing role in a GP practice if the patient needs a referral from the GP which creates an additional appointment for the patient which could extend their waiting time.

One carer experienced problems with accessing medication, including short supply 2 week waits or receiving medication that was not requested.

Impact of the caring role on carers

Lack of respite for carers is challenging for their wellbeing. We heard that there can be difficulties with arranging respite in terms of having to use an agency rather than being able to fund a family member or someone known to the cared for person. The respite care on offer is not always conducive to the needs of the family.

A huge amount of strain can be experienced by carers when they are supporting their cared for person through mental health episodes that last for several days. The carers need for support increases significantly. Carers expressed that being advised to refer to their care plan did not provide enough support.

The mental health of people who are carers can be negatively impacted by the responsibilities of the caring role which can be overwhelming. Carers felt that they had to be on top of everything and struggled with their own identity and felt that the life of the person they care for absorbed their own and they lost a sense of themselves. Carers stated that they also experienced physical health issues, whilst having to care for a loved one. Carers would like a named point of contact to discuss their concerns and own health needs in relation to their caring role.

Carers also stated that there are emotional and mental impacts of being a carer which also impacts on relationships. Some carers appreciate opportunities to talk through issues on their own without their loved one present. Carers need support and respite to cope but it is difficult if their loved one is not keen in taking part in activities within the carers group which then limits the carers time to be able to talk about their concerns. Carers stated that a confidential space away from home to be able to speak openly and discuss their concerns would be helpful. Carers would like counselling offered as standard through a carers package rather than needing to apply separately to talking therapies.

In addition, supporting carers to build relationships with cared for person when relations become strained was also expressed as a gap. Providing an opportunity where the carer and cared for person can talk together outside of counselling sessions to help rebuild a relationship was in some cases needed.

“I have chronic long term health conditions that leaves me considerably fatigued and in constant pain.”

“There needs to be carer centred care”

Managing the support needs of the cared for person in public can be difficult in situations where carers felt judged by others for any behaviours displayed by the cared for person. This is made especially prominent when there are invisible disabilities. The public are understanding when they realise that the situation is a carer /cared for person scenario.

It can be problematic for the carer when their cared for person is accessing secondary care and is moved to hospitals out of area, for example a Nottingham resident being placed in Birmingham impacting on the number of visits the carer can make.

There are also aspects of the caring role which can involve heavy lifting and handling which can also place physical strain on the carer. Availability of equipment e.g. hoists obtainable at Kings Mill hospital was also an issue for one family. Staff were not aware of where the hoists and related equipment were stored.

Multiple needs within families

We heard from several people in a carer/cared for dynamic within the family. Life is busy as a carer, especially in a family with multiple needs from different family members and when a carer has needs themselves and is looking after someone who is also a parent carer. Needing to attend meetings with a social worker and school to support the cared for persons needs can be a lot to balance. Another example scenario is where an individual has support from a spouse for a physical disability and their carer develops memory loss and the cared for becomes the carer creating a carer/carer situation where both parties are helping each other with dissimilar needs.

Navigating mental capacity, the ability to make your own decisions

There are issues with navigating the complexity of needs and the ability for an individual to make informed decisions based on the gravity of the situation and understanding the consequences. In instances where the cared for person has capacity and chooses not to receive respite care, the demand and strain on the carer increases without a break from the caring role.

“….Her ‘rights’ override our health, our wellbeing, our freedom and our rights, even though she quite clearly has memory, understanding and processing issues. I think Social Services will just wait until we as carers have a breakdown.”

Carers would like the carer’s view to be included when making a care needs assessment of an individual with Dementia. When the decision of accessing external carers is only based on the view of the cared for person and external support is declined the whole weight of the care falls to carers.

Carers are experts in their lived experience and would like a holistic approach with an aspect of flexibility to receiving support which addresses the needs of the carer and cared for person.

Information sharing and data protection barriers

Information not being shared with carers about the cared for person left carers feeling out of the loop and not respected. This is particularly difficult to manage when the non-disclosure is at the request of the cared for person. Carers receive third party information which felt imbalanced.

One carer mentioned that getting over data protection barriers was their main challenge. When consent was provided by their cared for person to primary care this was not transferred with referrals to hospitals or healthcare agencies. It was suggested that a code be added to the notes so that when the carer is called there is already an awareness that permission has been granted for the carer to speak about their cared for persons health.

One individual stated the difficulty when caring across the combined authority (carer in Nottingham, cared for person in Derby) there are issues in authorities talking to each other. Another experienced receiving mixed messages from the local authority on how the carers allowance can be used and what it could be spent on.

Recognising carers from diverse backgrounds

Carers were asked about what more could be done to support carers from diverse backgrounds. This could be people who have a disability, whose first language is not English, or carers who have a support need themselves. Carers mentioned issues with respite care, communication and stated what would support their circumstance

When considering respite care, several families from the South Asian community were unable to access the respite care because the care providers do not speak the same language as the cared for person.

We heard that carers either do not wish to make themselves known or do not identify as a carer. Many people rely on their family circle and do not see it as an extra responsibility. We heard that wording is important, people from the South Asian community may not identify as carers as traditionally families will take care of their loved ones. The term carer is likely understood as looking after someone who is terminally ill or going through treatment. In cases where people recognise themselves as a carer people still do not know that they can access support or where to go for it.

Many carers have support needs themselves. It was suggested that it would be helpful when providing treatment to a person who is a carer to check and confirm whether their carer has additional needs and provide support to the whole family. For example, carers who are deaf need to book and receive appointments in person, telephone procedures are not possible. Carers who have dyslexia may struggle with reading medication instructions. Providing information in formats that can be easily understood by people who are dyslexic by bullet pointing and making information concise would be helpful as well as allowing time to digest wording, it may need reading through 2/3 times.

We heard from one carer that clear communication was important for Autistic people. It was stated that services are not always transparent with carers on the service parameters. We heard that Autistic people would prefer to be told if a service is not suitable for their needs, even if it’s bad news, rather than having false hope and waiting for something that was not suitable in the first place. Where support is provided for carers who are Autistic, structured support activities at a set time works best. It was mentioned by one individual that it’s difficult to get a personal assistant who understands the needs of autistic people. Carers must start from the beginning training the personal assistant to understand the needs of the whole family which takes up a lot of resources, energy and time.

Particularly in family situations where partners are caring for each other who have different support needs we heard that having monthly reviews to check in with the carer to see if anything is troubling the carer or cared for person would be helpful. Long term support is preferred to shorter interventions such as Social Prescribing even if there is an invite to re-refer.

“When support stops, I feel left in the lurch.”

“People with disabilities are not taken seriously.”

It was noted that support groups tend to be for carers caring for frailer older people or people with dementia whereas some carers are younger and caring for younger adults.

Hearing what carers feel positive about

When carers were asked what they felt positive about, the support received from services and organisations was praised. Young Carers support groups were highlighted as using innovative ways of integrating young carers. The Carers Hub, district nurses and City Carers support groups and activity groups also received positive feedback. Carers had good experiences with children’s social workers and adult social care helping people to live independently. The support from friends and family was also talked about positively.

Carers also felt positive about how they had developed as individuals especially in qualities that are needed in the caring role such as patience, the ability to cope and take things in their stride. Value was placed on the lived experience of carers and how knowledge gained can be shared with others in a comparable situation.

Some carers also appreciated that they were still able to get out together, go to a support group, go for walks or have a meal and still be together.

Satisfaction and pride were expressed by being able to care for someone who really needed it and see the progress they have made, especially when they are a loved one. Carers reported feeling more confident in the caring role as time progressed and learnt what was needed for their cared for person.

At the listening event, it was mentioned that the volume of comments about what carers felt positive about was not a reflection on how positive carers feel. There was a keenness to share information on topics where ideas for improvement could be made and the conversation was more centred around that.

Some carers did not feel positive about anything.

Carers views on feeling recognised

When interacting with services some carers stated that they have varying experiences from healthcare professionals, some understand and include the carer as much is possible. Other professionals are not supportive of the carer and their contribution, in this instance, carers stated they feel invisible and not listened to.

“The law is in favour of the cared for person. The judgement of the carer is not respected.”

Carers feel that a consistent and holistic approach is needed for families to address the needs of the carer and their cared for person.

“No, carers are left to get on with it.”

Carers do not feel recognised financially, examples included not being permitted a blue badge, feeling that carers allowance is too low, or working people ineligible for benefits and therefore must balance full time work and caring duties. There was a query about whether workplaces are aware of how many employees are carers.

“Nothing feels easy.”

There were also some comments about the lack of understanding about the role of  carers by other citizens “a carer has to put their life on hold to care for another person”. Carers stated that they are socially poor and often isolated.

“Carers are recognised but not widely.”

The transition from child to adult social care is difficult for carers. When a child turns 18, they would access support for adults and carers are finding that they must start from scratch learning what is available to access. 

“They know we exist, but the services aren’t sufficient to support us all so most of us don’t ask.”

“No! They are invisible and ignored.”

There was a strong theme that carers do not feel recognised, and being told they are doing a good job is not enough. Carers stated that the contribution from carers is saving the health and care system a lot of money and carers do not feel adequately recognised.

“Walk in carers shoes, you will never understand how hard it is”

The findings from this engagement work will be shared with contributors and be made available on the Nottingham and Nottinghamshire Public and Patient Insights Hub[1] to enable wider sharing of system insights and on NHS Nottingham and Nottinghamshire Integrated Care Board website[2]. Insights from the engagement activities will also support the ongoing work around the Joint Carers Strategy. This report will also be shared with the Integrated Care Partnership (ICP), a statutory committee jointly formed between the ICB and all upper-tier local authorities that fall within Nottingham and Nottinghamshire.

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[1] Introducing the Nottingham and Nottinghamshire Public and Patient Insights Hub – NHS Nottingham and Nottinghamshire ICB

[2] Current and Previous Engagement & Consultations – NHS Nottingham and Nottinghamshire ICB