“None of us had a manual for this” Lived

slide1. “None of us had a manual for this”
Lived Experience of residents requiring care and support in Essex during the Covid-19 pandemic
Informing the Recovery Plan for Adults Social Care and Partners. Final Insight Report.
Nov 2020 (minor updates Jan 21) Research & Citizen Insight
Strategy, Insight & Engagement<br>
slide2. Introduction Situation Challenge Key questions explored Commissioners and senior leaders across ECC's Adult Social Care function seek insight in people's experiences of COVID-19 to inform their work with partners (including the NHS) and to inform recovery plans. The COVID-19 pandemic is being experienced differently by different groups and population. 

Public agencies' response to the pandemic has brought about changes in the way public spaces and public services work – including care and support services. How have vulnerable people been impacted?
How have people's experiences of support changed (including family, neighbours, community, and care providers)?
How have people overcome the challenges?
What has worked well?
What could be different?
What ideas do people have? 30/11/2020 Produced by Essex County Council Chief Exec's Office | 2<br>
slide3. This includes participants who:

Many crossed more than one of these groups. Approach 2 Collaborate in Action forums Jul 20 28 one-to-one interviews
Jul to Nov 20 10 focus groups
Jul to Sept 20 321 survey respondents
Sept to Oct 20 Physical impairment & long term conditions Carers Learning disability and autism Sensory impaired Mental health concerns Older people Drawing on existing channels
With thanks to: Collaborate in Action Forum, Healthwatch Essex and Summit.
We drew on these existing channels to help deliver the research alongside that conducted by Essex County Council. Fieldwork was conducted between end July – early November 2020. We used a common research design framework to ensure consistency.
2 Collaborate in Action Forums
10 focus groups
28 interviews (participants aged 21-86, Pan-Essex)
A survey targeted to 2,200 adults social care users and promoted widely publicly
A special thank you to all our participants who gave up their time to improve outcomes and services for others.
We use pseudonyms throughout to protect people’s identities. About the research 30/11/2020 Produced by Essex County Council Chief Exec's Office | 3<br>
slide4. About the report COVID-19 pandemic has impacted on all communities, but it has had a profound impact on vulnerable and disabled people. 

This report provides insight on the experiences of a wider range of vulnerable and disabled adults. It draws on the experiences of those who use social care support (self-funders and those supported by ECC); those who receive support through the voluntary and community sector and from friends, families and communities. It also draws on the experience of carers.

The report is not a commentary on the effectiveness of specific services or organisations. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 4<br>
slide5. Our central findings The shock of the COVID-19 crisis - lockdowns and guidance around shielding - has restricted the role that families, neighbours, informal carers and professionals have played in supporting vulnerable people. COVID-19 has also changed the way that care and support organisations operate. Many vulnerable and disabled people have experienced extraordinary care and support, from professionals and community groups.

For others, adjustments in care and support provisions have created unmet needs, and new challenges. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 5 While most residents can easily adjust to changes,  new ways of working or new safety measures, those with specific needs, vulnerabilities or disabilities, can face unique challenges particular to their situation. Some report being cut-off from businesses and shared spaces, and restricted access to services, support and activities.

This has diminished the ability of vulnerable and disabled people to go about their daily lives and impacted their independence and wellbeing.<br>
slide6. There are many positive stories and examples of excellent practice to build on. Building upon this good practice will be important in addressing the impacts that have led some vulnerable or disabled people to report feeling: Residents report that this has caused:
a loss of confidence,
avoiding going out,
loneliness and isolation
a decline in physical, emotional and financial wellbeing. Participants reported that periods of lockdown were the most challenging, but some residents were still not coping well when restrictions were eased and reported feeling worse as time goes on. The research was conducted between July and November 2020.
Without a concerted effort to meet the needs of vulnerable and disabled people within the context of the rules and restrictions put in to manage the spread of COVID-19 infections, these groups will continue to experience barriers to independence and reduced wellbeing. Unsupported and forgotten Unheard and excluded Frightened Cut-off and less connected 30/11/2020 Produced by Essex County Council Chief Exec's Office | 6<br>
slide7. What changed for people with a vulnerability or disability during Covid-19?<br>
slide8. 28% Over a quarter of survey respondents, experienced a change to their care or support, 68% told us there was no change Number of respondents who experienced a changed was 88 Most survey respondents said there was no change to their care and support but, where there were changes, these generally had a negative impact on individuals. Family was most likely to have helped or supported respondents but, a slightly lower proportion were supported during Covid-19 across all categories compared with before. There were 297 responses to this question. 56% (167) were ASC service users. Others received care and support from friends/family, EWS or were carers who don’t receive support. Several of our research participants talked about reduced contact from social workers since March, whilst others had regular and good quality communication. 8<br>
slide9. Although people largely received information in person, there has been a decrease in this method, during Covid-19 and increase in post, phone, email and online. Number of respondents to this question was 314 Respondents continued to seek information informally through friends and family, rather than more formal routes. Number of respondents to this question was 314 Most important is information about:
Health (79%)
Government guidelines (52%)
Accessing food and supplies (48%)
Finances (43%) 9<br>
slide10. People say that keeping in touch with friends and family is most important in maintaining their health and wellbeing. It’s more important to them than exercising or other pursuits. Exercising out of the home has decreased since Covid-19 but there has been an increase in exercising in the home. Survey respondents use a range of different activities in order to physically and emotionally keep well. Number of respondents to this question was 268 10<br>
slide11. Feeling unsupported and forgotten “None of us had a manual for this kind of situation. I think for us. I certainly felt abandoned completely…”
[Carers Focus Group 1, North & Mid, Aug 2020] To change systems overnight, to keep people safe was the priority. I think what they have forgotten was all the little vulnerable groups of people.
[Hearing Impaired Focus Group, Aug 2020]<br>
slide12. Feeling unsupported and forgotten Some participants feel they have been let down and abandoned. This is due to a number of challenges that have impacted people’s care, support and emotional health needs. Caused by: Community groups struggling with the demand for those with mental health concerns Loss of usual support networks and/or infrequent information (everyone with a support need and Carers) People being treated differently from their peers and non-vulnerable residents and feeling forgotten, frustrated and anxious Lack of usual care and support Mental Health demand Being treated differently 30/11/2020 Produced by Essex County Council Chief Exec's Office | 12 “The biggest challenge was not having the support, not understanding what was going on in the outside world. I haven't been in a shop since February.”
[Deaf Blind Focus Group, Aug 2020]<br>
slide13. Lack of usual care and support staff How can we ensure enough workforce when individuals’ circumstances change? Some participants experienced change in the support that they usually receive, particularly at the point of first lockdown.
There was a lack of available care and support staff including communicator guides. This impacted levels of confidence, independence and facilitated feelings social isolation. Lack of care and support included:
Loss of communicator guides for those visually impaired, respite for carers and personal assistants
Friends and family; to protect those shielding and formal care staff
Infrequent communication from social workers
Cancelled or missed appointments Potentially impacting everyone with a support need and Carers. “The support just went... Then we get a letter to say that all services are being reinstated... Why weren't you supporting us? We were your customers and a lot of us feel very let down and we didn't know which way to turn.”
[Deaf Blind focus group, Aug 2020] During Covid-19 Pete was assessed as needing carers at night, however the agency were unable to facilitate a bedtime call, so Edie pays her daughter to do this.  ASC has discussed direct payments with Edie but she worries this would be worse financially.
[Edie carer for Pete (80s), Interview] Feeling unsupported and forgotten 30/11/2020 Produced by Essex County Council Chief Exec's Office | 13<br>
slide14. Hannah’s Story - A journey to disengagement Hannah is 21 and lives at home with her parents.  She has autism and severe anxiety.  Hannah has difficulties in going out and making friends outside of her own family circle.  This leaves her parents exhausted.  Care hours took a long time to set-up and agreed just before lockdown so Hannah could get out more. Counselling was also agreed but failed to happen. Becoming disengaged from support Parents approached social care – 4 hours agreed Community Hospital Counselling agreed Lockdown Shift from face to face. Hannah unable to cope with phone call. Teams video call arranged. Hannah was there but Counsellor wasn’t. Lost trust and disengaged Long time to set up Met once Carer
changed Disengaged from process 30/11/2020 Produced by Essex County Council Chief Exec's Office | 14<br>
slide15. Feeling unsupported and forgotten Mental health demand has exceeded capacity How can we improve people’s access to mental health services including those in the community? Participants experienced escalating mental health concerns, at a time when it was difficult to access mental health support.
This increased their feelings of being let down as well as increased loneliness. People had difficulty accessing mental health services across both community and health services
In some cases they did not receive new support, or referrals into services.
Some did not receive help from their usual support. Impacts everyone with increased mental health concerns and those with diagnosed disorders. Those more isolated are not fairing as well. “My carers also help me to keep my mental health under control. My mental health has suffered during this time. I’m depressed. I’m scared to go out in case I bring it back home. I have lost close family members and wasn’t able to see them [live overseas], so I haven’t had closure yet. My husband was ill in April and can’t work yet. He doesn’t get sick pay.”
[Christina, 50s, Physical Impairments and MH, Interview] 28% Survey respondents told us they have a mental health condition (87) 30/11/2020 Produced by Essex County Council Chief Exec's Office | 15<br>
slide16. Mike’s Story – “I have never felt so alone in my life” Mike is in his 50s and hasn’t had any previous mental health issues and the decline in his emotional wellbeing was completely unexpected.
He shielded at home alone after receiving a text message from the GP and his wellbeing suffered due to the isolation. He feels that he was then targeted for redundancy, due to being off sick just before lockdown and, he lost his job.
He went to live with his friend after 10 weeks of isolation, when she became particularly concerned and the risk of Mike’s declining health outweighed the risk of Covid-19 for both. 
He contacted a lot of mental health charities asking for help; paid support would be his last report.
Mike is now being supported in the community.
 “I never had any sympathy for people who used to say they were depressed...
I went from feeling down in the dumps to…I don’t want to go there, and I am not out of the woods yet.” Mike, 50s, no previous mental health concerns

Shielding and isolation were the drivers …
 “I have never felt so alone in my life and I have never felt so low… I was saying things that really scared her [girlfriend]. I can’t remember but she said I was talking gobbledegook”

Let down...
“All I got back was an automated email about Covid-19 and what they are not doing. I needed to speak to a person.” Seeking help for mental health 16 Produced by Essex County Council Chief Exec's Office | 16<br>
slide17. Feeling unsupported and forgotten Being treated differently How can we improve consistency across peoples experiences of  services? Participants experienced different levels of care and support from a wide range of services and support. This support was different to what other people, including peers, is receiving.
Covid-19, the response, the capability of organisations to respond and the move to digital has caused more instances where these differences are apparent.
This inconsistency increased feelings of frustration and anxiety. Examples include:
Conditions not recognised as vulnerable
Difficulties getting on the vulnerable shopping delivery list during lockdown
Differences in hospital treatment and communication from staff – some good examples of treatment, allowing support and communication at Addenbrookes and Broomfield Impacts everyone with a vulnerability, disability or condition. “It feels like if you had Covid you were allowed in…if you haven’t you can't be coming in. That’s how it feels”
[Long-term Conditions Focus Group, Aug 2020] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 17<br>
slide18. and how they feel about themselves too…. Being left out of shielding status causes frustration, worry and makes people feel disrespected. It impacts what they may be entitled to and when. “I was in Colchester hospital and it was more confusion because they didn’t know what was going on. Because of Covid-19 they obviously wanted to get rid of people as quick as they can to stop people getting ill. But they didn’t resolve my problem. So if it happens again lets hope it isn't major.”
[Long-term Conditions Focus Group, Aug 2020] Being treated differently affects people’s perception of others “Some people here have the same conditions as me and they have received shielding letters and I haven’t. So the disparity over that. I have stuck myself in ‘clinically vulnerable’. My GP signed me off.”
[Long-term Conditions Focus Group, Aug 2020] “Having a nurse take bloods and, you know, the close contacts and the communicator guide in the room and obviously the surgeon himself come in all masked up and we were masked and the communication was very... I couldn't hear, couldn’t really see very well.
[Deaf Blind focus Group, Aug 2020] Others had a good experience of communication; a doctor explained to a visually impaired patient she was wearing a mask and coming closer to her.<br>
slide19. Some participants are content with how things are and it forms their future wishes:
Level of care hours to remain
Remain where they are (at home, supported housing or residential care)
For some where they are now will be their last home.
For others they are looking for a change:
Accommodation and support that enable more or continued independence is key
There was an understanding among carers and older people that residential care provides a safe environment where they or their family member can be cared for, when they are unable to continue to live where they are. James, 70s uses a wheelchair.  Carers visit twice a day.  He has kidney failure so anticipates this is his last home.  Some of his carers are friendly, anticipate his needs and do extra tasks like getting his clothes from the dyer.  A bidet would make his life better for now, but he was told he wasn’t entitled to one as he didn’t have bed sores. “I really do not want him to go back there [residential care]. His health suffered so much under them…We know one day that he’s got to have a home away from us because we’re not going to be here”
[Older Carer, Chelmsford] “I would be happy to have support in my home when I am older.  I do not want to go into a residential home.  I spent many occasions in hospitals and home settings when I was sectioned, and I don’t want to go back to that
type of place again.”
[Maggie, 40s, Supported housing] We spoke to participants about their care now and in the future 30/11/2020 Produced by Essex County Council Chief Exec's Office | 19<br>
slide20. Our participants told us about their positive experiences during this time and the things that were most important to them. Caring professionals, high quality care, no break in support and quality conversations were important throughout. Learning from the first lockdown was seen as key in future planning. Good practice and what’s important to people that could be built on, so people feel supported | 20 Consistent, high care standards Access to Mental Health support Caring professional practice Care and support that meets needs and supports independent living
No break in support
Consistently high care standards  
Clear routes for additional help if needed Response email / contact from services
Talking to a person
Consistently high service standards Consistently high care & hygiene standards  
Helpful social workers – it’s appreciated!
Caring care and dedication to the job; understanding, friendly, respectful, thoughtful and active listening Caring, safe environment & respite Regular contact from care homes
Safe environment
Package increases when needed – were appreciated!
Independent living
Older carers need right care in place
Recognition for carers
Work, life, caring balance & respite<br>
slide21. “Getting through this difficult time, staying safe and well.” “the way I was able to adapt to being at home. I have found it very difficult and have low moods, but not now.” During this pandemic, I am most proud of …. “The relationship with my husband. We have come closer together. It’s been good for us.” “My grandchildren. The youngest is going into the army. She’s making us proud in a different way” When Covid is over ... “I intend to travel…it’s an eyeopener. I love to travel, I’ve been to so many places … You can still travel with a disability. If you have willpower you can do anything.” 

“To keep my son home with the family and out of the residential placement until I can look to move him into independent living close to family” My aspirations …. | 21<br>
slide22. Feeling unheard and excluded It is difficult for everyone to be top priority; they want to look after the population. And they are just looking after the ones that are easy to look after.
[Hearing Impaired Focus Group, Aug 2020] “Apart from Deaf Blind UK that were quite on the ball, I don't think any of the agencies were really and you do feel totally let down”
[Deaf Blind focus Group, Aug 2020]<br>
slide23. Feeling unheard and excluded People feel they have been missed out of decisions and planning that affects them, impacting people’s self-worth and confidence, and their independence. This was brought about by: “People can be nasty when you are out with the guide dog and accidentally brush them or don’t follow the arrows”
[Visual impairment] Long inaccessible documents. ECC’s first communication was not accessible; getting it right will prevent disengagement. Unclear town & business signs, arrows and colours, lack of clear masks, intercom (sensory impaired, LD&A, physical impairment) Enjoying public spaces Inaccessible guidance Missed out of conversations about care or changes to care arrangements. Or due to communication difficulties; GP automated phone systems and call-backs (hearing impaired) Excluded from conversations 30/11/2020 Produced by Essex County Council Chief Exec's Office | 23<br>
slide24. Feeling unheard and excluded Enjoying public spaces How can we support residents with disabilities or vulnerabilities better in public spaces? Participants have had difficulties enjoying public spaces and some of that has been due to town signage, inability for those sensory impaired to social distance and the use of masks. The public are unaware of these difficulties.
This increases their feelings of anxiety, and reduced confidence. For some this means they are avoiding going out. This has an impact on spending money in businesses. Examples include:
Signs and arrows used for directional use not suitable for Blind and visually impaired people. Colours also need to be carefully considered.
Key workers not using clear masks which can affect communication from those that lip read or use facial expressions to communicate (e.g., cerebral palsy) Some challenges are specific to those with sensory impairments and some physical conditions “I don't do signs. I don't do social distancing and I don't follow arrows on the street because I can’t.”
[Visually Impaired Focus group, Aug 2020] 30/11/2020 | 24<br>
slide25. “People wearing masks and I am not able to lip read, and I rely on lip reading and facial expressions. So, I am not sure whether they are talking to me or what they are saying.
[Hearing Impaired Focus Group, Aug 2020] Excluded accessing public spaces and services “Social distance is a huge problem… its exactly the reason why we don't go out, because we get anxious and nervous, because we can’t socially distance in the same way. We don't know the street systems in the towns that we live in unless we have the support.”
[Deaf Blind Focus Group, Aug 2020] “We get anxious and nervous” People with sensory impairments find it very difficult to socially distance.
Guide dogs do not know how to socially distance and will often stop at closed exits without the person understanding why.
People that use tactile sign language or need to touch their environment are not able to distance.
There is a lack of public awareness about disability. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 25<br>
slide26. Feeling unheard and excluded Dismissed during or excluded from conversations Getting it wrong can make people feel marginalised and left out of decisions that affect them.
How can we get it right every time? Professional conversations are important in helping people to feel included, supported and respected. Not being listened to can be frustrating and lead to anxiety and a lack of confidence.
Poor communications increased feelings of being left out, frustration and worry and health. Participants told us that they sometimes felt:
Dismissed or ignored when spoken to by professionals
Excluded from decisions that affect them; their care, support and health
Difficulties with good conversations with GPs; call backs and intercom systems
People with LD&A found GPs automated phone systems difficult Impacts everyone with a vulnerability, disability or condition “A lot of people talk to the wheelchair and not to you…a lot of NHS staff do that …They think you don’t have the same worth or you’re not contributing to society. People can be focused on what you do not who you are.”
[Linda, 60s, Physical Impairments, Interview] In a lot of places, they are having intercoms, again like, doctors and having to make phone calls, a lot of them rather than going into places and speaking in person. So, I am struggling with that side of things.” 
[Hearing Impaired Focus Group, Aug 2020]<br>
slide27. Steph is in her late 70s and has a progressive illness that affects her mobility. She lives in supported housing and enjoyed an active social life which has now stopped due to Covid-19. She needs 5 timely visits a day to reduce risk of infections. She has been through “terrible things” with providers, which has left her feeling very frightened and alone. Good care for Steph would be “people who listen to me, to be gentle and caring”. 2nd provider in place 3rd provider put in place without discussion Steph’s Story – “Worn out trying to get what I should” Repeating what she needs and not feeling heard “Do they think I’m a zombie or I can’t speak for myself. I have capacity”. Relationship with provider breaks down - deviates from care plan About being put to bed at 9 pm. “I don’t think it’s fair, and I’m very unhappy about it… to me it’s not normal”. Breakdown of relationship with care provider after long decline 3rd provider deviates from care plan Looking to direct payments to source 10pm visit “Now I’m dependent maybe I shouldn’t expect to have so much normal life. On the other hand, why shouldn’t I” “My life is a misery” 30/11/2020 Produced by Essex County Council Chief Exec's Office | 27<br>
slide28. Feeling unheard and excluded Inaccessible guidance How can we get communications right every time? Accessible guidance helps people to feel respected and make decisions. Not doing this undermines trust in an organisation and causes people to disengage.
For some this may have led to a lack of awareness around support and services.
Poor communications increased feelings of being left out, frustration and worry. Accessibility - Get it right from the start! Participants told us ECC’s first communication was not accessible.
Residents struggle with inaccessible (small font, printed information, websites) or lengthy documents, application forms and guidance and can become disengaged. Impacts everyone but e.g. people with Sensory impairments and Older people, are finding things more difficult. “The information that we got from ECC was obviously very useful for those people that could read it…I went on an agency Facebook page.. when you think about how many people don't have the access, they wouldn't have known about anything that was happening”
[Deaf Blind focus Group, Aug 2020] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 28<br>
slide29. Increasing feelings of exclusion Inaccessible guidance and access to information about services Participants told us ECC’s first communication was not accessible. A number of participants were unaware of some newer services e.g. Essex Wellbeing Service but may have been getting support from other routes. The first thing that came to our doors from ECC was a massive envelope and that is information overload. To get to the bit that was relevant to us was really difficult … because it had not come in an accessible format…
[Deaf Blind focus Group, Aug 2020] The initial letter that I got from the hospital saying you're extremely vulnerable, was a normal letter [standard font] which can’t be read by me.
[Visual Impaired Focus Group, Aug 2020] “How do people get help if they don’t have the internet, a computer or mobile?”
[Sarah, over 85, Interview] ECC Covid-19 bulletins, facts and questions notification from the Council; providing carers with support worked well.
Information about direct payments that could be used for other support was also well received. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 29<br>
slide30. Community groups helped people feel included. They proactively offered practical support and help, to develop skills and talk through concerns. Some participants, not previously in contact with community groups did not know how they were contacted but happy they were. It’s been appreciated! Other research tells us …
“Response of local community organisations has been positive and are working well together” – Carer’s update (Source: ECC Adults Strategy and Innovation) “I was really surprised that I could get that help. EWS were great they called me every Friday to see if I was ok… It was a lifeline.”
[Mike, 50s, Interview] “I really love the Essex Coronavirus page I think they've done such a good job it's like banter they take the mickey. I think that’s such a great way to connect with people rather than being really stand off-ish and government speak.”  
[Physical Impairment Focus Group, Aug 2020] Good examples:
Day centres
Summit
Mencap
CVS
Essex Wellbeing Service
District councils
ACL
Sports for Confidence We spoke to participants about wellbeing and community support – they had great things to say! 30/11/2020 Produced by Essex County Council Chief Exec’s Office | 30<br>
slide31. Participants were appreciative that they were contacted proactively by a range of different organisations. Good practice and what’s important to people that could be built on so people feel heard and included Inclusive public spaces Inclusive guidance and communications Support from Community groups Co-producing town signage and colours
Clear masks for key workers
Disability awareness raising Information in accessible formats – first time please
Reaching out with new offers – appreciated!
Simple up-to-date information
Someone to explain things if needed
Accessible ways for accessing services Prepared people for lockdown
Proactively contacted existing clients for welfare checks, online safety and activities
Developed easy read guides e.g. Summit’s Zoom Innovative ideas from participants Sensory and disability trained people supporting people to access services and businesses
Social workers to help notify people of new services 30/11/2020 Produced by Essex County Council Chief Exec's Office | 31<br>
slide32. “Doing more meetings over the phone. I have lost 1 stone in weight.” “Taking photos in the garden and doing more Kite Flying.” “I have been able to adapt in a difficult time.” “To have kept well during the pandemic” During this pandemic, I am most proud of …. “I have stayed sane and I’ve fulfilled what I wanted to socially. I’m fitter and healthier. I’m like a different person and I’ve managed to travel a little. I love my freedom”
[Wife moved into Residential Care in March]

“To sing on a stage in front of people”

“I used to write sitcoms and the BBC were interested in one. I’d be able to do this again if I had a decent laptop I can use in bed as I need to lie down a lot [spinal injury]”. My aspirations …. “Being able to cook and turn my hand to domestic chores. My wife says “You made it lovely” “Starting a wellbeing programme for myself & keeping it up” “I’m closer to my son and helped his health” | 32<br>
slide33. Feeling cut-off and less connected “…. it’s not the same as having a cuddle. I use the video calls on my phone, I haven’t seen my friend as I haven’t gone out”
[Nancy, 80s, Carer, Interview]<br>
slide34. Feeling cut-off and less connected People feel they have been cut-off from the things that help maintain their health and wellbeing. Caused by: “I haven’t gone outside the house as I’m shielding … Everything seemed harder to do, that’s why I started the seated exercises” [Carer, 80s, Interview] Loss of access to work and colleagues has an impact on people’s purpose, identity and self-worth Clinic and centre closures and no suitable alternatives offered are impacting health conditions and recovery Access to health services Work and income No internet, accessibility, poor connections and lack of skill (LD&A, carers) and the closure of support from community offices and businesses. Ongoing support for some. It’s not for everyone! Technology access and support 30/11/2020 Produced by Essex County Council Chief Exec's Office | 34<br>
slide35. Feeling cut-off and less connected Reduced access to health services How can services and alternatives that work be kept going during times of changing priorities? Participants experienced an impact on how well they could maintain their conditions or recover from surgery due to health clinics closures.
This increased their worry and concern as well as a decline in emotional and physical health and reduced independence and increasing isolation for some. Reduced or no access to health service and clinics:
Health clinic and centres were closed
Some not offered alternatives; others were offered alternatives but did not work for them
Appointments postponed or cancelled
Some health staff / GPs refused to enter homes
Concerns that future services will be cut Impacts everyone but e.g. Sensory impaired, LD&A, PI, Carers, Older people are finding things more difficult. A carer’s husband used to go to a physiotherapy session once a month in a community building. He was offered an alternative of the health worker coming to their flat. The flat was too small to do this safely. No alternative has been offered. [Carers Focus Group, Sept 20] “For heavy service users, the pandemic has undermined a perception that the NHS will always be there for them. They have suffered greatly and feel left behind, with delays in treatments and diagnoses worsening health problems. There are growing fears they will go without the care into the future.” (Source: Britain Thinks. Patients, public and professionals. Sept 20)<br>
slide36. Jody’s Story – “Becoming more isolated without realising” Jody is in her 20s. She was given an emergency residential placement about a year ago as her parents could no longer look after her. She has a planned move in December to supported housing near where her parents live.
For the last year she has been living with people who are over 55 years old, which makes her feel “out of place”. Jody has many conditions affecting how she thinks, her vision and mobility. She has a serious mental health condition and is waiting for a new referral to Mental Health services. 
She also has not been able to access her health specialist services. The cancellation of some regular of these check-ups have led to her having regular panic/anxiety attacks and often presenting at A&E.  As a result, she paid privately for a telephone consultation adding to her worsening financial spend.
Jody is in regular contact with the RNIB who check in with her by phone. Her care has remained the same during Covid-19, but relationships with her carers have changed and she feels less connected.
She wants to move into supported living; closer to family, with people who are more her age and gain some independence. She hopes to move in December “Where we are able to shop, eat, cook and do day-to-day things” Jody 20s, not able to access health specialists

Jody feels less connected with staff since Covid-19 “Distance restrictions, they [the care staff] wear masks all the time... can’t have a chat with them…you can’t judge what mood we [all] are in, now all on face value, less interaction”

 Cancelled appointments made Jody feel
“less heard, but not desperate” Cancelled appointments led to increased anxiety<br>
slide37. Most survey respondents are not working due to retirement or disability. A smaller proportion are employed (paid, unpaid or furloughed) and smaller still unemployed. Most of our survey respondents are not currently working due to retirement or disability.
A small proportion 12% (40) are in paid or unpaid work or currently furloughed. 7% (24) of these are employed or self employed.
Only 5% (16) of respondents stated they were unemployed.
Most people’s financial situation has remained the same since Covid-19 (70%, 221)
For 18% their financial situation had worsened (57)
Only 3% (9) said their financial situation had got better
The worsening financial situation may be due to increased outgoings rather than decreases in income. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 37<br>
slide38. Feeling cut-off and less connected Work and income How can we ensure that people maintain their wellbeing even with reduced contact? Participants told us that the lack of access to paid or voluntary work, had made them feel lacked purpose, identity and self-worth.
Some missed the quality conversations, the colleagues they would usually have around them and work-life balance.
For others this also caused a decrease in income. Many were not able to work due to:
Shielding
Not being able to leave supported housing or Residential Care;
Closed workplaces (LD&A, PI)
Reduced ‘sitter’ pool offering respite (Carers)
Job losses & shrinking job market (Mental health) Impacts everyone in paid / unpaid work unable to work from home. “Working is not and should not be an age thing, it is about capability to do the job and the experience you bring”
[Amy, 70s, Carer, Interview] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 38<br>
slide39. Amy (70s) is a Carer and self-employed

“It is good brain health and helps me to maintain my professional identity with likeminded people. It is good respite from the caring role and helps to keep me sane.”

“The barriers [to working] are being in a caring role and balancing this with the need to meet family responsibilities whilst meeting my own needs” Amy is in her 70s, self-employed and a Carer.  For Amy working is not just about an income stream but helps to keep her mentally agile, provides her with purpose and a professional identity. 
The “pandemic has reinforced her own need and desire to keep on working for as long as she can”. She is motivated by her “need to build her own emotional resilience”. 
Amy’s work stopped due to the guidelines, shielding her husband and a reduced pool of ‘sitters’.  She wishes to return to work.  In doing so she would need to increase her network of sitters so she can take on more work with her clients.  She tends to use the same sitters her husband is used to.  They haven’t been able to come to the house due to the risk when Coronavirus was at its peak.  She is aware that her husband may not live long and “needs to ensure that her day-to-day life is not completely revolving around providing care”, otherwise she will not only have to cope with bereavement but also the additional gap in occupancy, feeling redundant and without a sense of purpose. Amy’s Story- “Working is not and should not be an age thing” Purpose and identity for an older carer How can Carers be supported to balance their lives and needs and have the right support to enable working and respite?<br>
slide40. Feeling cut-off and less connected Limited or no internet or phone use How can we help more people get connected, those with and currently without technology? Connecting with friends and family is key to boosting low mood.
Participants told us accessing the internet hasn’t been possible or wanted for everyone. With the huge shift to online information and get togethers not everyone has been able keep connected by technology.
For some this may have led to a lack of awareness around support and services.
This increased their feelings of disconnection and loneliness and affected emotional wellbeing. Not being able to access the internet could be due to:
Loss of access to the internet and / or reduced support to access the internet and make phone calls (LD&A in residential care or own homes);
Poor quality connections (Carers)
Some technology has poor accessibility functions e.g. Zoom (Hearing impaired / Deaf Blind)
For some picking up new skills isn’t easy and extra support is needed. For others it’s not for them. Impacting everyone but people with LD&A, Sensory impairments Carers & Older people are finding things more difficult. "Staff helped me on the phone before Covid" ..and now?
"I don't really. I miss it"
[LD&A Focus Group, Residential Care] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 40<br>
slide41. Feeling cut-off and less connected Loss of access and support to the internet Difficult for people to keep connected when community offices and businesses have closed:
Several participants with LD&A do not have internet at home or in residential care.
Some of this is due to cost.
Some need ongoing support to download apps or make phone calls. Many usually seek help and free Wi-Fi from community groups, libraries and cafes but offices are closed.
Those in residential care or supported housing were not able to leave site.  Staff may not have the skills, technology or time to help out. “I don’t like it [Zoom] and seeing faces it makes me anxious, it stresses me out seeing people I don’t want to see.”
[30s, LD, Braintree] David would rather talk on the phone. It’s more difficult now his wife’s health has declined to participate in social activities.
“Meeting like that [zoom] makes me nervous and embarrassed”
[David, 80s, Carer, Interview] Other research tells us …
Some care homes are lacking the equipment, time and skills to support residents.
“Care homes have not got used to us doing video calls. I have booked some and they forgot. They use their own mobile phones which is difficult for the adult to see me.” Social Worker
(Source: ECC Adults Strategy and Innovation)

Others have reassured family.. “I have to say the staff where they are living have been amazing and have gone above and beyond to ensure that we stay connected. They put photos and videos of my sons online every day for me to see what they’ve been up to. I also face time occasionally” Family Member/Carer
(Source: ECC Adults Strategy and Innovation) 30/11/2020 Produced by Essex County Council Chief Exec's Office | 41<br>
slide42. For many, face-to-face conversations are a preference to virtual appointments.
While people are happy for virtual calls for things such as minor health complaints, for more important concerns they wish to see someone in person.
Participants talked about the importance of building relationships with professionals and getting reassurance, which is harder to do when seeing them virtually.
However, some participants carers and those with long-term conditions told us that virtual appointments are better and mean less time, stress and travel. Carers and those with long-term conditions told us they preferred virtual appointments, whilst most prefer face-to-face Joanna felt that the positive to come out of COVID is hospital and health appointments – they are easier, done virtually and easily accessed in a timely way. For Regan to attend a hospital appointment in person, it takes a lot of organising of his personal care and transportation. Attending virtually, where possible, has been easier for the rest of the family too.
[Joanna (mum) and Regan, 20, Cerebral Palsy, Interview] “I don’t like it. Phoning the consultant is not the same. It’s much better face to face, to put things across. I can say what I like and being in the same room its better. We know each other”.
About the future of virtual appointments … “I can see it going to happen I still think we’ll lose a lot by it, but it’s better than nothing”
[Steph, 70s, Physical impairments, Interview] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 42<br>
slide43. Participants told us how they were keeping well Covid-19 has prevented many from doing the things that keep them well and happy.  ​However, many people are emotionally well, they found digital ways of linking to activities and are proud about how they have coped with the challenges.​
Spending time and connecting with friends and family is key to boosting mood.
People are also avoiding negative situations e.g., avoiding the news, shopping for food online.
Some schools worked with parents to find the best solutions for families & emotional wellbeing i.e., children going to school or staying home.
For some lockdown was not much of a change or a relief e.g., those with long-term conditions or in MH accommodation settings, where staying in is common.
For others it brought a new perspective on life; appreciating what they have. We spoke to participants about how they maintained their wellbeing – they had great tips! “Most found lockdown a relief. An opportunity to not be faced with the busy life outside their front door, they didn’t have to worry about ‘fitting in’, don’t have to worry how others would respond to their memory loss …” Alzheimer's update
(Source: ECC Adults Strategy and Innovation) Produced by Essex County Council Chief Exec's Office | 43<br>
slide44. Good practice and what’s important to people that could be built on so people feel socially and professionally connected Staying connected, access to health services; that help to maintain conditions, recovery and provide reassurance and, good quality contact is key to boosting people’s moods and feeling of self-worth. | 44 Accessing health services Paid and unpaid work Access to the internet Continued access to services and appointments
Offering alternatives (and alternatives to alternatives)
Inclusive conversations Work-life balance (and continued level of care to allow it)
Working from home - less travel time and stress
Staying connected with colleagues when furloughed
Employers making reasonable adjustments for high risk Staying connected to the people and activities they love
Trusted simple help e.g. Summit’s zoom guide & safety software
Access to good internet (some cost issues)
Ongoing support needed by some -
It’s not for everyone! Innovative ideas from participants Training to realise potential of the internet
Tech-savvy people offering peer-to-peer support
A policy to work from home if you have a disability<br>
slide45. “Making a YouTube video” “Becoming more knowledgeable online and on social media and learning new skills to make my life easier” “I have done a lot of cooking which I have really enjoyed, and I will carry this on as we move forward..” “I think I have managed to cope really well and keep myself busy with my art and craft, especially having no internet.” During this pandemic, I am most proud of …. “Doing a Podcast for walking football” “Freedom is the thing I miss…it’s enforced lack of freedom at the moment.” 
Linda (60s) intends on learning how to drive soon…. “It will make a very big difference to my life. I won’t have to keep asking my husband. He is 70 and might not be able to drive for much longer.”

Linda is getting the car adapted to an automatic so she will be able to drive it. She reached out to Motability and managed to get 40 hours paid driving lessons.

“Not many people know about Motability, I will promote them to everyone.” My aspirations …. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 45<br>
slide46. Feeling frightened A doctor kept rubbing his forehead with his gloves then went to give Linda the breathing test equipment. She got her wipes out and worried for the next 2 weeks about Covid-19. [Linda, 60s, PI, Mid, Interview]<br>
slide47. Feeling Frightened People feel very anxious, scared and angry about other people’s behaviours and the fear of infection. It’s impacting people’s confidence in going out and having people into their home. This was brought about by: “…I’m so frightened of going out on my own, seeing how people were behaving during lockdown, so much aggression”
[Carer, 80s, Interview] Concerns about accepting support from ‘untrusted sources’, such as neighbours or online security (carers; visually impaired, older people, LD&A) People’s behaviour not following the guidance, lack of disability awareness, some aggression (visually impaired, older people, physical impairment, autism) From the public, care staff and residential care setting including concerns about Covid-19 testing and PPE Fear of infection People’s behaviour Trusting others 30/11/2020 Produced by Essex County Council Chief Exec's Office | 47<br>
slide48. Feeling Frightened Fear of infection How can we support residents with disabilities or vulnerabilities better in public spaces? Participants have told us about their fear of infection. This is often caused by uncertainty and lack of control. This has impacted their ability of going out as well as well as making choices to stop care staff and family coming into their homes. In some cases professionals refused to come into people’s homes.
It’s affected people’s confidence, increased their levels of anxiety and worry and had a huge impact on loneliness and mental and physical wellbeing. Participants told us about examples of :
People not socially distancing or wearing masks
Health and care staff not wanting to visit homes
Fear of having people and staff into their home
Lack of usual support from family to protect care staff
Care staff not having new hygiene & safety procedures Returning to the workplace and public transport Affects everyone, but higher levels of anxiety are seen in people with a vulnerability or condition. “In terms of going back to work they can wait for me. I will go back when I’m ready and when I think it's safe to do so.”
[Physical Impairment Focus Group, Aug 2020] “I asked the carers about their procedures but they told me they didn’t have any. I asked them to wear a mask.”
[Christina, 50s, PI, Interview] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 48<br>
slide49. Other research tells us…
An ambulance crew took a patient back to his care home, the patient had Covid-19. Out of nowhere came about 5 more Carers shouting at us to leave. They said ... "Why should we take him, we are clean. We aren't having him here. Take him back" so I replied, “but this is his home”. The patient was very upset as he had just heard everything. [Source: RRT Mailbox]
“… I rely on my PAs for all aspects of my care… I think it’s important to ensure that my PAs are tested before they come back to work for me. My main PA has been trying to get tested for the past 3 weeks” [Source: Direct Payments Mailbox]
“…some of the Carers have reported that their GP is refusing to go out to see the person with Dementia due to the pandemic and their physical health needs are not being addressed, subsequently requiring hospital admission.” Admiral Dementia Nurse (source: ECC Adults Strategy and Innovation) 18% Almost a fifth (30) of our survey respondents were not hopeful or worried about the future Fear of catching Covid-19 is observably higher in people with a disability or condition from this research vs. our non-disabled user research.
(Source: Research on Residents’ Attitudes to Covid19 lockdown and beyond). A fifth of our survey respondents were not hopeful or worried about the future. Levels of fear are observably higher in our vulnerable residents compared with our non-disabled residents. Other ECC research suggests that family members and carers suspended or handed back care, GPs refused to come to homes and some care homes refused to take back residents due to concerns over infection. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 49<br>
slide50. Sarah’s Story – “Maybe I’m getting the best I can expect” Sarah is over 85, lives alone, and is fully independent.  She has a progressive illness and knows that if she gets Covid-19 she will not survive. She needs information to be simple and explained to her in person or on the phone.  She’s had a significant decline in her mental health.  She’s petrified about catching Covid-19 and is having panic attacks for the first time ever.  She is frightened, lonely and isolated despite the community support she gets and, frequent calls from family members; it’s not quite enough. 
CVS provide her with support, arranged shopping deliveries, and a befriending service that calls once a week.  Her neighbour helps her with small things that mean a lot. Her children live out of county, she talks to them on the phone and they try to reassure her. Her GP referred her to the Mental Health team but she agreed to be ‘taken off the list’ as she isn’t suicidal.   All of this is not the same as quality contact, a cup of tea and a hug.  
She wants to know if her family can come into her home or she go to them, but she is terrified of the risk to her health. She needs help to make this decision or for her support to come around her in a different way. She called her GP to ask but was 33 on a call waiting list; she doesn’t have the stamina to wait. She is miserable and it’s affecting her physical and mental health. Practical help for peace of mind “I’m lonely and alone…there’s no advice out there. I feel let down”<br>
slide51. Feeling Frightened Fear of people’s behaviour How can we influence people’s behaviours locally? Many participants said they were frustrated and anxious about people not following the rules, or not wearing masks whilst in public spaces. Some members of the public have been inconsiderate, aggressive or abusive to others.
People feel a level of unfairness or inequity when others do not follow the rules. They are also viewed as lacking consideration for others. This increased participants feelings of anxiety, fear and despondence and reduced confidence. Participants have had difficulties enjoying going out:
Some of this is due to people’s behaviour; not following the guidance and a lack of disability awareness is making people fearful of going out. Visually impaired, older people, people with physical impairments and autism “No one keeping to the rules…It’s making me angry.
I’m avoiding going out”
[M, Autism] “I was very, very scared and apprehensive [going out], and my confidence went right down to try and get myself motivated really… And I'm getting there slowly, but I'm very nervous. I'm not the person I was before covid, you know, mentally, physically.”
[Deaf Blind focus group, Aug 2020]<br>
slide52. “I’m so frightened” Some are too frightened to go out or wait until quieter times Other research tells us …
30% of responses to a door-to-door survey in July about General Health in Shelley ward, Epping Forest were about social distancing and concerns that this wasn’t happening in public places (Source: Community, Culture & Wellbeing Team, Epping Forest District Council). “I have felt very anxious going into shops, especially when other people are not following the distance rules. I took advantage of home deliveries from local firms that were advertised on Facebook”
[Vulnerable women with disabilities Focus Group] “People can be nasty when you are out with the guide dog and accidentally brush them or don’t follow the arrows” [Visual Impairment Focus Group, Aug 2020] Several of our sensory focus groups mentioned how guide dogs getting into others spaces and their inability to social distance had been met by frustrations, aggression and some abuse from others. Our participants think people’s behaviour is due to unclear government guidelines.
Or that people have forgotten, don’t care or don’t think it will happen to them. “…everyone just thinks it's just a cold. This is a killer disease.” “There's no clear guidelines the government don't make it clear. It would be nice if everyone did what they're supposed to do.”<br>
slide53. Feeling Frightened Trusting others How can we help build trust amongst neighbours and communities? Participants raised concerns about online safety and wanting information from trusted sources.  
Some said they had turned down offers of support from neighbours or did not want neighbours to know they were vulnerable.
This sometimes increased feelings of isolation and in some cases, this moved people towards more formal and trusted community group help and support. Participants told us about the concerns of :
Accepting support from ‘untrusted sources’, such as accepting support from neighbours
Not wanting neighbours to know they live alone and might be vulnerable
Carers, older people and people with LD&A spoke about the importance of online security and safety Largely affecting
Carers, visually impaired, older people, LD&A “SUMMIT gives me information in a way I understand. If I have trouble, they talk me through it as well. I don’t go to new people because you cannot trust them.”
[60s, LD&A, Interview] “I did have a note put through my door from a neighbour saying if I needed anything to call them, but I am so unsure of peoples intentions I wouldn’t ask for help even if I needed it, I have to know I can trust them.”
[Carer, 80s, Interview]<br>
slide54. 18% 18% of respondents helped in the community since the outbreak 96% Would continue to help people in their community Although trust is a concern with some of our participants, a fifth of our survey respondents helped out others during this time. They are supporting others in more remote ways. Number of respondents to this question was 57 Other research tells us …
Many volunteers - particularly those who are older or vulnerable - began to ‘shield’.
Working age volunteers joined driven by more free time, lower barrier to entry, and a common cause to rally against.
In more deprived communities we saw higher numbers of people seeking support, but fewer volunteers and more volunteers per person seeking support in less deprived areas.
(Source: ECC Research & Citizen Insight and Service Transformation Volunteering Discovery)

Only 13% Shelley residents and 15% of Paternoster residents in Epping Forest said they were supporting their neighbours.
(Source: Community, Culture & Wellbeing Team, Epping Forest District Council) 30/11/2020 Produced by Essex County Council Chief Exec's Office | 54<br>
slide55. Maggie’s Story – Managing mental health during Covid-19 Maggie is in her 40s and has a serious mental health condition and learning difficulties. She moved into supported housing 6 months ago and away from her family. Maggie’s life had just turned a corner when lockdown happened.
“Not seeing the people, I have learnt to trust has been the hardest, because of my mental health, my thoughts are telling me it’s because these people now know me, so they don’t want to see me anymore” 
Mentally she still struggles and needs time and support from others to help her to understand why she thinks as she does and other people's intentions towards her. She finds it hard to trust people.   A social distancing befriending buddy organised by the voluntary sector has helped her with this.
She’s been able to have face-to-face appointments with the doctor. They know her well.  She doesn’t like talking on the phone and is too embarrassed to use Zoom.  She’s been listening to music, meditating, and walking to improve her mood. She’s lost 2 stone in weight just from walking!
Maggie is looking to the future. She wants to learn the skills needed to keep a house and cook so she can have her own place in the future. She’s started to save money for this. Maggie, 40s, supported housing

Maggie’s life had started looking up…
 “I moved into a new home, started attending some groups & had a circle of support outside of the home but that’s all changed when I needed it most”

At one point she couldn’t leave site 
“I have felt really lonely, cut off, isolated but now I have the social distancing buddy that has really helped.” Community befriending support helping with mental health 30/11/2020 Produced by Essex County Council Chief Exec's Office | 55<br>
slide56. Clap for carers, as well working against a common enemy facilitated communities coming together and mutual support. ‘Over the fence’ chats, putting an item on the shopping list, and sharing baked goods were common mutual support activities.
Participants found it inspiring to see positive news stories of people helping others. Mutual support helped to lift spirits and offer practical support.
We spoke to some participants in July and August and at that point some felt that community spirit is declining, and the end of shielding meant that people had less time to help. We spoke to participants about community spirit “It helped the world come together” “I think everyone was helping each other because we were all in the same boat. Everyone was scared about getting the virus. Now those people have gone back to their jobs and I still don’t have a job, so we are not in the same boat anymore”
[LD&A Focus Group, Residential care] There are limits on community spirit and a feeling it is in decline and a missed opportunity for some.
“Richard Dawkins got it right in The Selfish Gene, we are genetically disposed to help people who are not directly related to us because we share similar genes. The genes only desire is to reproduce itself... Would you lay down your life for one person? No. Would you go to War for a Nation, yes.”
[Mike, MH, Interview] 30/11/2020 Produced by Essex County Council Chief Exec's Office | 56<br>
slide57. Information from trusted routes, advising people on controlling the situations they can and having a good supportive network around is important in reducing fear. Good practice and what’s important to people that could be built on so people feel less fearful, less lonely 30/11/2020 Produced by Essex County Council Chief Exec's Office | 57 Safety Mutual support in communities Innovative ideas from participants People being disability aware, socially distancing and wearing masks
Trusted routes for information and support (e.g. community groups, websites)
Online safety and security important for some Mutual support in communities helped to lift spirits and offer practical support
Volunteering and helping out others helped people feel part of community & purpose in it Disability awareness campaigns
Clearer guidelines, stronger messages and fines to change people’s behaviours
Peer-to-peer tech support for Carers<br>
slide58. During this pandemic, I am most proud of …. “I am proud that I coped really, it was very scary, and it still is” “Cheering up my friend when he was sad.” “Having accepted opportunities that have been presented to me. …My confidence has grown, and I have learnt to adjust in these difficult times.” “Learning to do without the things I don’t have, reading the Bible and helping my friends with information.” “Sharing information with people.” My aspirations …. “I get a little braver each time I go out to the supermarket” “Once this is finished I will start going out a bit more, to get some fresh air and to see something different”

Joanna hopes in the future that Regan her son (20) can go to college, where he will be supported, to help him access education/employment and eventually be able to live independently, with support. 30/11/2020 Produced by Essex County Council Chief Exec's Office | 58<br>
slide59. Areas for action suggested by participants<br>
slide60. Potential areas for action Whilst this report outlines the challenges that have been experienced by residents who have a disability or vulnerability, participants have told us about some of the ideas they have.
Recommendations will be developed in action-planning webinar sessions. Supported Included Connected Facebook groups for those receiving care, divided into local areas, providing peer-to-peer support
Clearer guidelines, stronger messages and fines Co-producing town signs
Clear masks for key workers
Work from home policy for employers Internet training and simple online safety advice for everyone
Peer-to-peer tech support for Carers Confident Disability awareness campaign
Sensory and disability trained workers to support access to services 30/11/2020 Produced by Essex County Council Chief Exec's Office | 60<br>
slide61. Appendix 1 - Summary of priorities and innovation by cohorts<br>
slide62. A table that summarises the priorities and ideas from participants (1)<br>
slide63. A table that summarises the priorities and ideas from participants (2)<br>
slide64. A table that summarises the priorities and ideas from participants (3)<br>
slide65. Appendix 2 - Understanding the impact of Covid-19 nationally in relation to local Essex impacts<br>
slide66. Practical issues around food shopping: Increased reliance on friends and family due to issues with getting onto the vulnerable list for shopping.
Changes to care packages: Reduced care packages and cancelled support.
Mental health impact on care home residents, visitors and staff.
Unpaid/family care:
Extra care responsibilities
when day centres closed. Concerns around PPE and testing: This was common around direct payment holders with PAs and also the wider workforce and testing in care homes. Lack of PPE provision for the workforce had a disproportionate impact on women and BAME communities given their contribution to the sector. Challenges around communications: Between councils and people who access care and support and perceived delays to government guidance.
BAME groups: Some felt isolated/frightened about how they might be disproportionately impacted and felt they did not receive additional information.
DP holders: Poor to good
communication guidance
around employing
PAs and shielding. Digital exclusion: Some people’s inability to use technology; access to equipment; and concerns over online safety. Loneliness and isolation: For some, an increase in general anxiety has had a large impact on mental health. Feelings of being “imprisoned” but also a strain on relationships with lack of personal space.
Increase in health anxiety: A lack of physical activity along with boredom and lack of control took a heavy toll on mental health.
Shielding: Decisions
around managing risk
and quality of life. Increase in health anxiety: Some people experienced delays or cancellations in accessing health services.
Cancellation of respite and day services: Adding to increased pressures, particularly on unpaid family carers and Shared Lives members.
Reduction of mental health services. Financial pressures: There has been an extra cost to households (particularly in food and bills). Some people have had to spend more money on shopping by having to source differently.
Disabled people in employment: Some individuals who received support from government’s Access to Work scheme ‘felt abandoned’. Practical issues around food shopping: Large queues to get into shops meant that those with time pressures, like carers, were unable to complete the shop in the time available. Some respondents were turned away for ‘not looking disabled’.
Changes to streetscape: Impacts on visually impaired people and their ability to get around safely. Think Local Act Personal: A Telling Experience
Understanding the impact of Covid-19 nationally in relation to Essex Linking national key findings to our own local impacts:
The text relates to national TLAP report not our local insight. The blue images are the aspects of our local insight that connect to the TLAP report. Source: TLAP. A Telling Experience https://www.thinklocalactpersonal.org.uk/covid-19/tlap-insight-group/TIG-report/ Fear of infection Lack of usual care and support Inaccessible Guidance Technology access and support Access to health services Work and income Enjoying public spaces Mental Health demand<br>
slide67. Appendix 3 – Additional case studies<br>
slide68. Edie cares for Pete (80s)

About Direct payments
 "Nobody said about the figures, it might be jumping from the frying pan into the fire”

Extra respite
"I can do my shopping and have a coffee“.

Virtual appointments less stressful…
“It takes time to prepare for appointments; washing, dressing and travel” Edie cares for her husband, Pete. They are both in their 80s. After Pete overcame cancer he had several strokes, and a major one a couple of years ago “can beat strokes, coped with cancer ”.  Edie's health is fine, but her husband’s mobility has declined during the pandemic.
Pete had 3 visits a day from carers. During Covid-19 he was telephone assessed as needing carers at night. The agency were unable to facilitate a bedtime call, so Edie pays her daughter to do this. ASC are aware of this and have discussed direct payments, but Edie is not sure about how this would work or worsen their situation.
Edie is happy with the quality of care her husband received throughout and was also awarded 4 hours of respite a week during the same assessment.
While several of Pete's medical appointments were cancelled i.e. physio, he was visited at home by health professionals for blood tests & a throat swab. Differences in who will visit the home is confusing – why will some come and others not?
Edie has a close network of friends and family for support. She is aware of Carers First, but has not needed to use them.  A good outcome for Edie would be…
Pete to receive the specialist support he needs and delay deterioration to his health which would impact on Edie's ability to care for him Edie’s Story – “He could walk up the stairs before” Concerns about accessing the health services Pete needs<br>
slide69. Nancy’s Story – “I am a Mum but also a Carer” Nancy is in her 80s and has significant and worsening memory problems. Several years ago her daughter received a brain injury.  Her daughter is now in her 50s, and she lives in a flat that is inaccessible. Her daughter says, “I would love someone to take me out”. 
She has been referred for a carer's assessment by a local voluntary organisation, but Nancy doesn’t view herself as a Carer. They expect that she will tell social care that she is okay and doesn’t need help.
Neighbours have offered to help but Nancy doesn’t trust them, so accesses known local community groups and services.  Nancy asks for help with correspondence, usually getting support from Age UK for this, but they were unable to help at this time, so she recontacted the same voluntary organisation who were able to support.
Nancy has concerns about her daughter’s housing and care situation.
The voluntary sector have helped the daughter to claim PIP, supported with the remote assessment and with a housing application for sheltered accommodation.  Her daughter’s flat is completely inappropriate, and she is unable to access the community.
Nancy needs …
“For my daughter to be in a home that she can manage to get around. Not where she is living at the moment” Nancy, 80s, Carer, lives alone

“I need to get things in place for my daughter’s future. I would not know where to start”

“I have always cared for my daughter since her injury and had some support from the family.  As I have got older, I need more help and support but have never known where to go for this help or what to do.” Community befriending support helping with mental health<br>
slide70. Greg (80s), Chelmsford

“My wife feels abandoned. I feel abandoned and it’s because of Covid”

“The staff have been wonderful it’s just the place that is tired. It needs some paint”.

“Where the residents eat it is like an old works canteen”

“Its quite upsetting the state she’s in. I know that it’s to do with her illness but she blames me for putting her there.” Greg’s Story- “I’m very sad that things have ended up this way” Greg is in his mid 80s, and since March 2019 has lived alone. The day before lockdown his wife (80s), who has Vascular Dementia, was moved to a residential care home as Greg was unable to cope with his wife’s escalating health and care needs. They have been married 60 years.
He was not able to see his wife for 9 weeks, during this time he called the home to find out how she was. Then he would see her in the garden. A few times he’s stood in the pouring rain just to see her through the window. He’s happy with the staff care, but the home is rundown.
Greg is fitter and healthier than he’s been in a long time. He feels like a different person and more part of the community now than he did before. He’s happy his wife is in a safe environment, but really worried about her and wants her to feel happier.
He hasn’t heard from a social worker since March. He doesn’t know what is happening. He knows that his wife needs to be in residential care but does not know if the placement is temporary or now permanent. A run down care home<br>
slide71. David (84), Carer

David’s grandson had a few symptoms and now is too worried about coming around at all.

David has been offered extra respite hours but cannot fill the ones he has currently. His wife can be abusive and he only feels comfortable asking his family members to cover respite and come into the house to clean.

Social media makes him nervous and embarrassed and he much prefers calls and in person contact. David’s Story- “Covid has changed how support works” David (80s) is caring for his wife at home who has mixed dementia.  His attitude to care hasn’t change but “Covid has changed how support works”.  His family and friends provide a few hours of respite usually during the week and he uses his Direct Payment for this.  However, this had to stop during lockdown, and he has seen his granddaughter only in the garden since then.  
He contacted the mental health team due to a change in his wife’s condition and he then got a call from Adult Social Care 1 to 2 weeks ago, to check how things were.  He found the call reassuring.  He knows that more help is available when he needs it.  “I wouldn’t have the £23,000”.  Whilst his wife still has moments of recognising him, he does not want her to go into residential care home.  
David uses the internet for finding information but not for Teams or Zoom as this makes him nervous and embarrassed.
David used to go to the dementia café.  He liked the physical meeting and managed to get his wife there once.   Although this is something he can no longer do, they ring him every week and he feels he has someone to talk to if he needs. He also liked ‘singing in the brain’ and a local activity centre but was not able to go with his wife who didn’t want to go without him, but this was all before Covid. More help will be there when it is needed<br>
slide72. Joanna (mum) and Regan (20).

Joanne described Regan not being able to go to transition during the pandemic was a huge ‘battle’

Due to the sudden move, Regan has struggled and has become a bit more withdrawn. He needs social interaction to motivate him and this has been stopped in most cases due to social distancing. The family have been affected too. Joanna and Regan’s Story - a huge ‘battle’ Regan (20) has Cerebral Palsy and has been under ECC social care for years. Just before the pandemic, a careful transition to full time residential care had begun with a gradual move, with some weekends at home. The unit is where Regan used to go to school.
The transition was delayed by several weeks due to Covid-19, and the school did not want to accept Regan, who was moved several weeks late. The stepped approach was unable to happen, but the family have been able to see him.
Joanna felt that COVID came at the wrong time as Regan was going through transition services having turned 20.. Contact with the new team and navigating the system has been difficult said Joanna as they have ‘a new ways of doing things, especially when she always knew where to go or who to speak to do in the past. Her experiences of the new team have not been as positive and on occasions she felt her emails were not responded too or she simply didn’t know who to talk to in relation to education, social care and direct payments.
Joanne describes the school not wanting accept Regan and it was a huge ‘battle’ resulting in having to seek help from one of the ECC managers to get support in her discussions with the school. The outcome was he was able to go to school, and she was grateful for the support from ECC, but the whole thing was stressful, tiring and difficult for the whole family. Transitioning to residential care<br>
slide73. Appendix 4 – Focus group and interview cohort details<br>
slide74. 30/11/2020 Produced by Essex County Council Chief Exec's Office Cohort details – focus groups and interviews 6 Focus groups delivered by Healthwatch Essex
3 focus groups and 11 interviews delivered by Summit
1 survey, 1 focus group and 17 interviews delivered by Essex County Council.
For consistency; a common question framework was designed and used, and analysis completed by ECC.<br>
slide75. Contact Us
This information is issued by:​
Essex County Council​
Strategy, Insight & Engagement ​
Research & Citizen Insight​
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You can contact us in the following ways:​
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By email: ​
research@essex.gov.uk​

maresa.beazley@essex.gov.uk; maura.o-malley@essex.gov.uk;
​
Visit our website:​
www.essex.gov.uk​
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By telephone:​
033301 30874​
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By post:​
Essex County Council, Research & Citizen Insight (SIE)​
E4, County Hall, Chelmsford, Essex CM1 1QH With thanks to:
Our research participants
Collaborate in Action Forum;
Healthwatch Essex;
Summit/AB4D;
ECC Research and Citizen Insight,
ECC Adults Commissioning;
ASC Strategy and Innovation;
Community, Culture & Wellbeing Team at Epping Forest District Council;
Emily Wojcik, Integrated Partnership Lead (Carers)<br>