Ageing Well (Frailty Pathway Community Engagement)

Executive Summary

The Ageing Well pathway works to empower older adults to lead healthier, more independent and fulfilling lives for longer. As part of reviewing the pathway we engaged with older adults and carers about how they receive healthcare and what matters to them. Our aim is to be responsive to our ageing population and proactively focus on ageing well and enabling citizens to live in good health for more of their lives.

Osteoporosis affects approximately 3 million patients in the UK. It is a disease that weakens bones, making them fragile and more likely to break (fracture). Over 500,000 patients present with fragility fractures to hospitals in the UK each year[1]. The burden of preventable fractures on the NHS is enormous; 1m acute hospital bed days are taken up by hip fracture patients and £2bn is spent annually on hip fracture care alone[2].

However, fragility fractures can be prevented; a Fracture Liaison Service (FLS) is a multidisciplinary service, which aims to systematically identify, investigate, initiate treatment and integrate care for all eligible patients, over the age of 50, who have suffered a fragility fracture; with the aim of reducing their risk of subsequent (or secondary) fractures. This includes the infusions of bone strengthening medication such as IV Zoledronate and Denosumab.

The current ageing well pathways, including the fracture liaison services, that are in place across Nottingham and Nottinghamshire are not equitable and need to be reviewed to ensure we are meeting the needs of our ageing well community.

Discussions had taken place within a task and finish group consisting of ICB colleague and clinical representatives around the current and future pathway where it was agreed that an engagement exercise would be undertaken.

We were keen to understand people’s experiences of multi-disciplinary teams, personalised care approaches, holistic approaches, people’s experiences of virtual wards and also understand views and thoughts around End of Life Care.

Just under 200 citizens and professionals shared their views on different aspects of the aging well pathway, including in person conversations with those who the pathway impacts significantly.

This work will provide us with relevant feedback and views to understand the ageing population in Nottingham and Nottinghamshire and their views of health and social care in our area and what people would like to see in the future to support their health and wellbeing.

Key Findings

Patient education and information needs to be clear for carers, families and relatives around how people can manage their health and wellbeing
There needs to be clear communication with patients and families around the care that people receive and the setting in which they receive this.
Many people noted that they were not aware of the information available around End of Life provisions, including ReSPECT forms and Do Not Resuscitate wishes.
Digital access is a great issue for older adults with many citizens not having access to access to relevant technology – they would also rather have a face to face discussion rather than over the telephone.
Extended wait times for appointments across the whole pathway have been noted during this engagement.
Patients would prefer to see specialists for each specific condition they have rather than having one single appointment with a general expert in older peoples’ care.
The ageing community do not want to rely on friends, family members or carers to support their health and wellbeing needs they feel that this would be a burden and want to feel independent.
Communication needs of our deaf community need to be considered when healthcare professionals need to discuss their health and wellbeing needs.

Next steps

The report will be shared with the Frailty and Bone Health Team to consider the key findings together with the conclusion and recommendations outlined in this report which will feed into a future pathway.

[1] Osteoporosis | NHS Inform

[2] Campaign for 100% FLS | Royal Osteoporosis Society

Conclusions and recommendations

Conclusion 1: Older and frail people, especially those with complicating factors such as being deaf, having a diagnosis of dementia, or those with multiple conditions, struggle with the complexity of pathways involved with the ageing well services.

Recommendation 1: Simplify pathways to reduce the number of appointments needed to access services, and provide clearer suitable communications to fully explain the process in a way that is suitable to the individual receiving care.

Conclusion 2: Many patients felt excluded from conversations around their care, particularly when a carer was present in healthcare appointments.

Recommendation 2: Practitioners should check with patients and carers what can be done to ensure that the individual is included primarily in conversations where their healthcare is discussed, if appropriate. Provisions should be made in advance to allow this to happen if necessary.

Conclusion 3: Communication between healthcare professionals and patients is often not suitable for the individual across in-patient, out-patient, and general care settings. This is often due to untimely letters, over-reliance on digital, unawareness about disabilities, such as deafness, or staff being unaware of or untrained on communication aids.

Recommendation 3: More emphasis should be put upon the individual’s ability to communicate, whether digitally enabled or not, and flags for communication difficulties should be prominent and shared across all healthcare providers the individual needs. Staff training must reflect the need for taking communication factors into account.

Conclusion 4: Despite positive experiences of staff overall, communicating what is available for the family and carers of those who are at the end of life can be lacking, especially when it comes to medication, pain relief for the individual, and which service to contact in the need of an emergency.

Recommendation 4: Consider the development of clear resources which can be given to families who are going through end of life, or a greater effort given to ensure the individual and those around them have access to this information.

Conclusion 5: Many elderly people recognise the value of virtual wards (also known as “hospital at home”) and are happy to access care through this route, however they worry that they will not be able to properly use the technology required to engage with them properly. The primary concern for where people receive care is whether it is safe or not, rather than the specific location.

Recommendation 5: Ensure that those who may be suitable for virtual wards are given the information on them clearly and early to provide the maximum amount of training on any devices or procedures. Where possible, also include any carers or family members on the training too.

Conclusion 6: General knowledge around ReSPECT Forms and Do Not Resuscitate (DNR) provisions is mixed. However, ReSPECT Forms are typically unknown to elderly patients.

Recommendation 6: As part of ageing well healthcare interactions, begin to educate patients on what they are, and provide an opportunity to complete any necessary forms if desired.

Background

Methods

Survey Findings

A total of 105 people completed at least one section of the survey. At the start of each section, every respondent was given a short introduction to the topics covered and asked if it would be relevant to them, if not the respondent is able to skip it. The answers below are split per section. For more details on seeing a full version of the survey, see appendix A.

Carers section

Of the 105 survey respondents, 33 identified that this section was relevant to their experience.

Do you currently provide care for an older person, in the way described above?

Yes	70%
No	24%
Prefer not to say	6%

Do you identify as an older person yourself, caring for another person, as defined in the introduction?

Yes	80%
No	16%
Prefer not to say	4%

How many hours a week do you usually carry out unpaid work?

0-15	56%
16-30	16%
31-48	8%
49+	16%
Prefer not to say	4%

Outside of caring, are you in some form of employment?

Yes	40%
No	60%

Under your employment, how many hours a week do you usually work? Include paid and unpaid overtime.

0-15	40%
16-30	8%
31-48	24%
Prefer not to say	28%

Experience of care received section

42 respondents completed this section of the survey which covers their recent experience of in-patient and out-patient care.

Which best describes you, or the person you care for? Tick all that apply.

I am managing well, my medical condition(s) are well controlled	29%
I feel I need to do things slower and feel tired during the day	48%
It takes me much longer to do things and I need help with some housework, finances etc	46%
I am completely dependent on others for personal care	8%
I only need help when my activities take me outside of my house	11%
I am managing well, my medical condition(s) are well controlled	29%

Do you have experience of a being treated by a multi-disciplinary team (a group of people from different professions, such as pharmacists, occupational therapists, and social workers, working together on your care)? You may have heard this group being called an MDT.

No	59%
Unsure, but I have heard of MDTs	7%
Unsure, I have never heard of MDTs	7%
Yes – it did not help with my care	7%
Yes – it was really positive	20%

Would you like to be involved in MDT meetings regarding your own care? If so, how would you like to be included? Select up to three options. (included as number as respondents can pick multiple)

Yes, attend via a video/phone call	13
Yes, present at meetings	16
No	9
Yes, fed back to via a short report	10
Not applicable	2
Yes, attend via a video/phone call	13

Are there any further comments you would like to add about multi-disciplinary teams?

A key theme that was raised when respondents answered this question was around poor experiences of working with MDTs. It was felt that each member of the MDT had a different agenda when it came to the individual’s health, or that the teams would be apathetic when it came to their recovery. Respondents also noted struggling to get access to an MDT, but those who had not said they could see the value of them.

“I would really like to participate in the management of my health and want to lead a more active life. I would like to be supported to manage my health conditions without dependence on drug therapy wherever possible. I see this kind of healthcare to be the gateway to a longer, more active life that will enable me to continue with my hobbies and pastimes, stay out of hospital, and remain in my own home looking after myself as I continue to age.”

“Those who suffer from long term conditions related to aging are simply expected to ‘get on with it’.”

Thinking about a healthcare meeting (like a GP appointment). Please tick the boxes which describe the care you or someone you care for has received from within the community. In this case, care in a community setting could mean receiving care in your home, a nearby health facility, or at a care home, or a community health location. (included as number as respondents can pick multiple)

I / the person I care for was central to any treatment decisions.	18
The treatment was more focused on the disease than me / the individual living with the condition.	14
My / their holistic (overall personal) needs were met.	4
Things outside health were discussed. For example: housing and falls.	7
The clinician focused only on my/their conditions and there were no discussions on holistic care.	16
I have no experience of this.	2

Please add any further comments about community services for older people with multiple health conditions.

Poor patient relationships with healthcare professionals came up as a prominent theme during this question. With patients experiencing either inconsistent contact or not being respected as an equal partner in their health. Respondents reported being spoken down to or not at all.

Similarly, a poor experience was reported in the care that is received, with professionals not being aware of conditions and time pressures removing the option to explore what can be causing health problems holistically.

However, we did also hear some positive experiences of care, including being on a virtual ward, and from specific teams, including the Falls Team at Retford hospital.

“I have found that clinicians do not want to involve me in my treatment options or provide holistic care. Everything that I know about my conditions I have found out through books and supportive charities, or experts on YouTube.”

“I feel that the time pressures upon GPs do not allow them to explore anything apart from the problem presented to them. For example, I sometimes wonder if some of the conditions which I experience are part of natural ageing and I therefore just have to accept certain things.”

Thinking about being an inpatient as an older person. Please tick the boxes which you feel are relevant to the care you/or someone you care for has received when needing hospital care as an emergency admission, for example receiving care through A&E or the emergency department.

I / the person I care for was central to any treatment decisions.	12%
The treatment was more focused on the disease than me / the individual living with the condition.	24%
My / their holistic (overall personal) needs were met.	2%
Things outside health were discussed. For example: housing and falls.	2%
The clinician focused only on my/their conditions and there were no discussions on holistic care.	32%
I have no experience of this.	27%

Please add any further comments on emergency hospital inpatient delivery of care for older people.

The written feedback to this question mostly noted negative experiences of care. We heard that many people struggled to access care when at A&E services, with some respondents having to return for multiple consecutive days to be seen. We also heard that elderly people were left in the A&E department overnight in temporary beds, only to be moved to a ward the following day.

We heard similar poor experiences when it came to not adapting the individual’s care to their specific circumstances, such as having mental health difficulties or dementia. This caused a lot of distress for those involved in the care.

“Referred by my GP to surgical triage for suspected appendicitis, I spent three days going to and fro, sitting on a chair in the corridor outside the unit and going home at night. I was in pain, and it was a dreadful experience. No one communicated with me at all.”

Thinking about being an inpatient as an older person. Please tick the boxes which you feel are relevant to the care you/or someone you care for has received when needing hospital care as an elective admission. For example this may mean any pre-planned surgery or treatment.

I / the person I care for was central to any treatment decisions.	27%
The treatment was more focused on the disease than me / the individual living with the condition.	17%
My / their holistic (overall personal) needs were met.	10%
Things outside health were discussed. For example: housing and falls.	0%
The clinician focused only on my/their conditions and there were no discussions on holistic care.	37%
I have no experience of this.	10%

Please add any further comments on elective hospital inpatient delivery of care for older people.

In response to this question, we heard a mix of positive and negative feedback. Overall, staff experiences were positive, with respondents noting consultants and surgical staff were of high quality. However, people also reported long waiting times and a lack of some facilities.

“As a Buddhist I have found a total lack of faith facilities for me.”

Thinking about seeing a healthcare professional in a clinic or outpatient service. Please tick the boxes which you feel are relevant to the care you / or someone you care for has received when needing hospital care as an outpatient i.e. when being seen in a clinic.

I / the person I care for was central to any treatment decisions.	37%
The treatment was more focused on the disease than me / the individual living with the condition.	24%
My / their holistic (overall personal) needs were met.	0%
Things outside health were discussed. For example: housing and falls.	5%
The clinician focused only on my/their conditions and there were no discussions on holistic care.	29%
I have no experience of this.	5%

Please add any further comments on outpatient / clinic services for older people.

In this question, we heard that there were repeated experiences of poor staff interactions. This led to frustration from patients and services not being suitable to their needs. Patients feeling dismissed by staff was also noted heavily in response to this question. Clerical errors leading to missing appointments were also raised and further difficult interactions with staff.

The contrast that is felt to those who previously had regular doctors they would attend was raised.

“I attended for an investigative procedure at short notice where, again due to clerical error, my medical notes had been misplaced. The Admin Staff present on both occasions failed to apologise for my delays, instead becoming irritable and rude.”

“Seeing cardio respiratory nurse she failed to mention she was listening for AF had she done so I could her given chapter and verse on the investigations I had including the monitor fitted in my chest.”

If you have any other experiences that you would like to share about accessing health care as an older person or carer of an older person, which have not been covered above, please enter them below.

In the responses to this question, we heard a strong theme around the difficulty in accessing services, for a variety of reasons. For some individuals this included barriers in getting referred into a service, leading to them having to resort to private treatment, while others had different blockers to access, including being digitally excluded or physical impairments.

We also heard about the importance of personalising care in these cases, including reasonable adjustments such as providing alternate cutlery, helping to fit hearing aid batteries, or cleaning false teeth when the individual is not able to do so. Similarly, for those who have memory problems it was suggested to ensure that a carer or another relevant person was there who could support the conversation.

“It is high time clinicians recognised that everyone is different, that one level of communication does not fit everyone, and that we all bring something different to the party. Each of us should be given an opportunity to participate in discussions about our own healthcare, including in the provision of documented treatment plans.”

Ageing Well section

65 people filled out this section of the survey, which related to their preferences for receiving healthcare.

What matters to you the most, when considering how you receive health care / when supporting the person you care for in receiving healthcare? For example, receiving assessments and treatment quickly.

A very prominent theme we heard in response to this question was around accessing services. Many older people struggle with transporting themselves to where they need to access care, meaning when they become unwell or have many routine checkups they aren’t able to be seen easily. It was also noted that they felt staff were often unavailable, or unable to be seen face-to-face which is preferred. This linked to another significant response which was a desire for more local services, which could be carried out either at home or closer to it.

It was also noted that timely treatment was a priority to respondents, with some saying they would prefer telephone assessments as aftercare where appropriate to speed up the process. People also want to receive the results of tests and assessments much quicker and get in touch with healthcare professionals faster. We also heard that reducing wait times in general was a key factor to people.

Clear and effective communication was highlighted in the responses, with people wanting more attention paid to how they wish to be communicated with, pointing out digital exclusion. The information that is received by people is often too complex and therefore they cannot understand it, there was calls for this to be fixed.

“Be easily accessible and timely. If diagnosis or intervention is delayed older people suffer more rapid deterioration”

Would you prefer to receive healthcare / support the person you care for receiving healthcare in a community setting or within a hospital? In this case, care in a community setting could mean receiving care in your home, a nearby health facility, or a community hospital.

Within the community	77%
Within a hospital	12%
No preference	18%
Other	3%

“Other” responses included references to needing to know the severity of the condition.

To what extent is each of the following important to you when receiving care outside your home?

	Very important	Important	Neutral	Not important	Not important at all
Access via public transport.	38%	23%	17%	12%	9%
Parking near to the entrance/location.	55%	22%	6%	9%	8%
Cost of parking.	46%	17%	20%	6%	11%

Virtual wards or “hospital at home” is a service which provides care for patients with frailty in their own homes instead of hospital. They do this through digital technology to communicate with you and by using remote monitoring tools to keep an eye on your symptoms. If all of the following options were a safe way for you to receive care, where would you prefer to have it?

At home, via a virtual ward	63%
In a hospital	12%
No preference	25%

Do you have any other comments about where treatment as an outpatient or inpatient takes place?

Responses to this question reflected the fact that the answer to this question changes depending on the specific illness or condition being faced by the public. However, some of the key themes were that people wanted local services where it is safe and accessible. Many elderly people may struggle with mobility so this can help them to engage with services.

We also heard that those who are digitally excluded may struggle to use virtual wards safely, so extra care would be needed for those who choose to be placed on one to ensure they can do so.

When it comes to receiving care at any location outside of the home, respondents highlighted the importance of high-quality facilities where people can access their care safely and at the highest quality.

“Hospitals are a big journey for anyone around Nottingham and Nottinghamshire so having services available in my community would be preferable either expanding local health centres or creating community hubs where health providers can provide services like clinics.”

“I think there is a real danger of losing credibility in the care service if ‘inappropriate’ locations are used.”

Bone Health Section

In total 40 participants responded to this section of the survey relating to bone health in whether they have this condition themselves or care for someone with a condition.

Do you care for someone who currently manages a bone-related condition, or do you have one yourself?

Yes, I care for someone who currently manages a bone-related condition	7%
Yes, I currently manage a bone-related condition myself	67%
No	26%

What challenges do you/the person you care for face in managing the bone related condition?

A number of respondents who responded to this section informed us that the challenges they or the person they cared for faced related to pain and movement including being motivated to conducted exercises.

A key theme that mentioned during this section also included falls and around preventing these to avoid further admissions or treatment.

A further strong theme related the impact that this diagnosis has on people’s day to day lives and the further impact it has on doing activities to support their conditions when trying to manage their pain.

“Being motivated sufficiently to do strengthening exercises which would help prevent falls and fractures”.

“Being able to manage day to day activities and the time it takes to do things due to pain”

What aspects of bone health concern you most? For example, fractures, pain, Osteoporosis, and mobility.

Respondents who answered this section of the survey raised concerns around pain and mobility. The majority of respondents who commented mentioned that further advice on strengthen exercises would be welcomed to support them together with information on what services or advice could be sought from trusted communities and not to have to pay for expensive gym memberships.

Further concerns that were raised were around waiting times for appointments and treatments and the impact that this has on their mobility issues and managing pain.

“I would like more support in exercising although I go to the gym do Yoga and Pilates it is expensive”

“The need to do strength exercises but no gyms that offer advice that is trusted in my community even though there are gyms”

“I get called once a year for an infusion and then nothing. It feels very disjointed – no regular check ups and no advice on diet, exercise etc”

What do you like about the current system of bone health care?

Throughout the responses received it was noted that the participants wanted to comment on the workforce in receiving good care when needing to access. A number of comments were also noted around the supported offered from staff to patients and accessible information available when needed.

It was also noted that some services feel a little disjointed and regular checks or advice are not received across Nottingham and Nottinghamshire. Some people also commented on the waiting times for appointments and that information needs to be made available for all patients particularly around falls prevention and what this particular service is offering.

Respondents also commented that further information needs to be provided on exercise and other free activities that people can access to support with their mobility and rehabilitation.

“Being a fortunate patient in receiving the gold standard care programme, which is not available to all who need it”

“When you get an appointment, the staff are always helpful and friendly”

“GP extremely helpful prescribing appropriately due to prolonged use of steroids for health condition”

What improvements would you like to see in the current system of bone health care?

From the responses received it is clear that communication is an improvement that patients would like to see to understand more around conditions and what services are available in Nottingham and Nottinghamshire.

Additional comments were also received around the need of patient education and additional support services that are available to assist with bone health conditions and understanding and learning more about what is available in the community for patients. It was also clear from responses that information should be provided around the prevention aspect especially around falls and support for people helping themselves to be active and connect with groups to help with ongoing conditions.

A number of comments were received around the waiting times for people to see healthcare professionals for their appointments to access treatment.

Respondents also noted that hospital settings are not always the best place to receive treatment as some have stated that it would be advantageous to receive treatment at home or in a local setting near to where they live.

Comments were also noted around the need of regular appointments for conditions to be monitored and checked.

“Maybe bone health clinics locally where you can access advice on diet, exercise, strength exercises etc. with groups to get you out and about being more active”

“More focus/advice on preventing the escalation of the condition”

“Improved patient education and preventative measures”

Is there anything else about managing a bone health condition or caring for a person who is managing a bone health condition you would like to share?

Throughout the responses which were received for this section it was noted that a key theme was around not having enough information for patients to maintain their conditions or how to improve any previous conditions.

It was also noted that people feel that departments don’t necessarily talk to each other about conditions which can be frustrating for patients and when they attend multiple appointments.

There is also a clear need for communication to be passed to patients about what services they can access locally and within their community to help them with their conditions and also to support with a preventative programme of further falls, fractures taking place in the future.

A further key theme noted was around multiple conditions that a patient may have and the impact that this has on their health and wellbeing in managing conditions.

“If there were more pro active preventative programmes maybe less people would develop conditions”

“I am a group exercise teacher for older adults and can see how exercise in a group setting helps people to socially interact encouraging positive mood and keeping the participants fitter, healthier and more independent”

“I don’t think there is enough information provided on how to maintain bone health or how to improve previous damage”

Personalised Care section

In total 76 respondents noted that this section was relevant to their experience of health and care services around personalised care.

If there was an option to bring many different appointments into a “one stop shop” with someone who is an expert in caring for older people would you:

Prefer to continue to have multiple specialist appointments.	21%
Have a single appointment bringing all health concerns together with the option for specialist input only if needed.	63%
Have the option to have no specialist appointments and be looked after by local GP.	17%

GP practices are working harder than ever to see patients but cannot always see everyone as quickly as they or patients would like. With regards to your GP appointments how important are:

	Very important	Important	Neutral	Not important	Not important at all
Seeing the same GP?	51%	24%	20%	4%	1%
Seeing a GP the same day? (This may mean seeing a different GP each visit)	20%	43%	28%	8%	1%
The ability to see someone other than a GP, for example a nurse or pharmacist, who may be able to see you sooner than a GP.	20%	43%	24%	10%	3%
Having my personal medical history shared so the healthcare professional knows about my history?	54%	38%	7%	0%	1%
Professionals understanding what is important to my quality of life?	72%	28%	0%	0%	0%

End of life section

Of the 105 Respondents who completed the survey, 70 respondents commented and completed this section as being relevant to them.

Have you made plans for your own care as you get older, including your wishes for end of life care, and discussed them with friends or relatives?

Yes	37%
No	55%
Prefer not to say	1%
Other	7%

Of the other comments that were noted in this section participants noted that they have had some discussions with loved ones, friends, family and faith groups but no definite plans had been finalised.

Do you feel able to have a conversation with healthcare professionals about end of life?

Definitely	47%
Somewhat	29%
Not considered	13%
Somewhat not	1%
No	5%
Other	2%

The other comments were noted around participants not feeling reassured with conversations with healthcare professionals and another one around awaiting the outcome of the assisted dying bill in Parliament.

Do you feel able to have a conversation with loved ones about end of life?

Definitely	53%
Somewhat	29%
Not considered	6%
Somewhat not	4%
No	6%
Other	3%

It was noted that during the other section some participants did not have any family members or relatives to discuss this issue with.

How would you rate your current knowledge of the following end of life provisions?

	Very high	High	Average	Low	Very low
ReSPECT Forms	14%	19%	21%	10%	36%
Do Not Resuscitate (DNR)	34%	23%	26%	3%	14%

If you were at the end of you life what support would you think you would need? Please use the “Other” box to add further details.

Medication	48%
Healthcare professional over the phone	21%
Information leaflets explaining the process	9%
Prefer not to answer	1%
Other	21%

The key theme that was noted during the other responses was around the support needed from healthcare professionals to make decisions particularly around medication and pain relief to someone who is at the end of their life. An additional comment was around communication and information to support people to make the right decisions for them at the end of their life and which would also provide practical and emotional support to families. These are key themes that have been noted in the additional comments sections below.

Have you been with someone at the end of their life?

Yes	83%
No	16%
Prefer not to answer	2%

Did you get the appropriate support during that process?

Definitely	20%
Mostly	20%
Somewhat	19%
Lacking	19%
Prefer not to answer	7%
Other	16%

Of the other comments included for those who have complete this section, it was noted that the care received whilst in a Hospice Setting was excellent. There were some negative comments around the lack of support that had been received to individuals during this time from healthcare professionals and also that some relatives had paid for a private nurse to support whilst at home.

If you were to look after someone at the end of their life, what support do you think you would need at home?

A key theme that was highlighted through this response was the practical and emotional support required to ensure that those who wish to be cared for at the end of their life at home is available to those who are caring for someone. This could be delivered by professionals in attendance or via telephone support.

A number of responses also reflected on the need to understand more around medication and to help alleviate the patient’s pain when needed and understanding more around what service to contact in the need of an emergency. A professional guide or information was noted that people would find useful to refer to.

A clear theme noted throughout was around the care, compassion and dignity and respect that needs to be adhered to with all health and social care professionals for those who are currently receiving end of life care – Whether this be in their home, care or within an acute setting. This was also supported to ensure that workforce have sufficient training to support individuals at the end of their life or carers.

“Everything that would support creating a comfortable, pain-free, dignified departure with additional health carers visiting regularly throughout the day to ensure this is respected”

“Visits from experienced professionals to explain current situation & what is going to happen”

“Someone to be with you to support you both when the time came and who was trained to make them as comfortable as possible”

“Easy access to advice”

“Care and compassion”

Demographics

92 people consented to sharing their demographic information as part of the survey.

How old are you?

40-54	1%
55-64	25%
65-74	42%
75-84	26%
Over 85	8%

Which of these, best describes your gender?

Female	65%
Male	35%
Prefer not to answer	0%

Is your gender the same as the sex you were assigned at birth?

Yes	100%
No	0%
Prefer not to answer	0%

What is your relationship status?

Divorced	12%
Living with partner	10%
Married	55%
Single	10%
Widowed	11%
Prefer not to say	2%

Which of these, best describes your sexual orientation?

Asexual	3%
Heterosexual/ Straight	88%
Lesbian/ Gay Woman	2%
Prefer not to say	5%
Other	1%

The “Other” response said “don’t understand some of these options”.

Which of these best describes your ethnicity?

Arab	1%
Black British	1%
Black Caribbean	1%
British Indian	1%
Indian	3%
Mixed White and Asian	1%
White English, Welsh, Scottish, Northern Irish, or British	90%
Prefer not to say	1%

Which of these, best describes your religion or belief?

Atheist/Humanist	1%
Buddhist	4%
Christian	46%
Hindu	2%
Humanist	2%
Jewish	1%
Muslim	1%
No religion	37%
Pagan	1%
Sikh	2%
Prefer not to say	2%

Engagement events findings

As part of the engagement for the Ageing Well pathway, members of the ICB Engagement Team attended listening events across Nottingham and Nottinghamshire. At each of these events, a tailored set of questions were designed to gather information based on the overall survey in an appropriate way depending on the group visited. Links to the online survey and physical copies of the survey were also distributed to groups to share with those who were not able to partake in the face-to-face engagement.

We heard from 4 people at a Tenant Meeting in Tuxford, another 10 individuals who were diagnosed with dementia in Beeston, and 50 members of the deaf community in the city centre (some members of the group were from surrounding areas). We adapted the questions to be more suitable to the groups based on recognised conditions in partnership with the staff working there, the modified questions can be seen in appendix 2.

Below is the feedback we heard from each meeting.

Tuxford Citizens Meeting

The Engagement Team was invited to speak with representatives of a local community of older people in Tuxford at their regular meeting.

The residents shared calls for more regular healthcare appointments to discuss the patients’ needs as they age, rather than simply to discuss issues as they arise. However, there was an acknowledgement that workforces are stretched, so it was noted that more needs to be done to improve the time spent by staff.

We heard how access to healthcare can be a problem. For some people with multiple conditions, it can be hard to get an appointment, especially with a GP, as some of those present said they had to travel to the practice to hear anything, only for staff to send the individual away and request that they ring instead. We heard that for some conditions this can cause significant problems.

Serious concerns around wait times for ambulances were also raised, with one person in attendance describing how another resident pulled an emergency cord after falling ill with gallstones. Upon multiple calls to the hospital and the individual eventually falling unconscious due to pain, the patient’s son had to take them to be admitted in their car, after four and a half hours of unsuccessfully waiting for paramedics or ambulance. The residents said that a better use of the community facilities, such as a local fire station’s emergency ambulance, would help alleviate some pressure on services.

Regarding end of life, it was felt that partners of those who were dying were not listened to or considered as part of the picture. For one individual who was present, the poor experience of their partner passing led to a decrease in their own mental health and wellbeing in turn meaning their general health declined and was themselves admitted to hospital.

When a patient has accessed it, the quality of care was reported to be high, but issues around complicated pathways and other accessibility prolong the time before it is received. The opportunity to simplify appointments for those with multiple conditions into a “one-stop-shop” would be welcome, provided it was safe and the person conducting the appointment had a strong knowledge of all the conditions present.

Vast variances in digital skills were raised as a significant issue. A single patient who is on different pathways will likely receive communications from each in different formats, with some preferring digital. For those who are not digitally able this is not possible. There needs to be a greater input from the patient voice on how communications from healthcare are received, and for those wishes to be honoured. We also heard that confirmation letters of appointments are often received after the appointment has occurred.

It was also noted that the older generation still want to keep their independence and avoid feeling like a burden on others. Any changes to services which make it easier to do this would be welcomed.

Dementia Group Meeting

The team attended a local support group for those who have a diagnosis of dementia. Some of those in attendance had been diagnosed recently, while others had a longer-standing diagnosis.

We heard that consistency is one of the most important aspects for this group when it comes to healthcare, both in terms of quality and in seeing the same member of staff each visit; similarly, seeing people face to face makes a big difference, faceless appointments can cause unnecessary difficulties in communication, or understanding the technology needed to partake. There were calls for simple and fast procedures in health pathways, including paperwork, as they can get confusing. We heard that having to see many consultants before reaching an end point can feel confusing, it may be better to provide a “roadmap” so that the individual can see their progress.

Regarding bone health, it was reported that medication creates many issues for those with other conditions, including dementia. Primarily, many bone health related medicines can interact negatively with those taken for dementia, meaning it can take a long time to find appropriate ones while those that are being taken don’t work. Also, side-effects and administration guidelines are not fully explained. For those who take multiple medications this can not only be frustrating, but if forgotten will take away from the efficacy of the medications. Those from the group said it would be better to have clear instructions sent home with them which come with an explanation of how and why the medications affect them, those which come in the packets can be too hard to read.

During both in-patient and out-patient appointments those present reported that if there was a carer present, the individuals were rarely spoken to themselves. Conversations around their health would be directed at the carer even if they were clearly able to partake themselves. The discussion would also be focused entirely on the conditions and disregard more holistic conversations which could benefit the individual.

When asked about the opportunity to see a single expert in caring for older people, rather than separate consultants, we received a mixed reaction. Those present appreciated the ease, as they found navigating around hospitals difficult, especially when seeing professionals for multiple conditions in different areas on the same day. We were told that the maps provided for doing so were often too complicated and contained information which wasn’t relevant, leading to greater confusion. There was also a concern that they may not be experienced enough in all the conditions that an individual may have. Similar concerns were heard about virtual wards, as well as the concern about being able to use any equipment that is sent home.

Older People Deaf Community Group

The Engagement Team also had the opportunity to speak to a group of older people from the deaf community, hosted by the Nottingham Sign Language Interpreting Service.

Around half of the members present shared that they had regular appointments for specific health conditions and that they would prefer for these to stay with the separate, relevant consultant. This was because they had a poor experience of communication with the NHS already and felt that it may add to the complexity which is already high. Similar experiences were heard around those who work with Multidisciplinary Teams, as it was felt that the professionals do not communicate to each other well, and communication with the deaf community from within the team is poor. There was overwhelmingly negative feedback on this aspect.

A number of people shared their experiences of inpatient care. They expressed that the communication is poor in hospitals despite having the technology. Many staff do not know about the programmes such as SignHealth, but even when they do the WiFi connection in the hospital is not strong enough for it to function, this leads to a negative impact on the patients emotional and mental health. The deaf community feels disempowered due to this, often not being able to discuss or understand discussions around their own care. Regarding inpatient care, we heard of many staff refusing to remove masks which prevents even limited conversation through lip reading.

We also heard some staff talk to relatives not the patients when interpreters are not available which means family members are hearing about health and results long before the patient does, as well as the patient being excluded from conversation. As a significant portion of people in the deaf community cannot read, and there are no provisions for communication readily available, when discharged with medication many are not provided with instructions they can use on how and when to take the medication.

It was clear that there needs to be better identification on patient record for those who are deaf, as adaptions to their care need to be made. We were told of many times where individuals were offered phone appointments, or only offered communications in ways that are not appropriate, including being vocally called when in a waiting room prior to an appointment.

Appendices

Appendix A: Survey Questions

To see a copy of the full survey, please email nnicb-nn.engagement@nhs.net.

Appendix B: adapted questions

Dementia Group

Do you have experience working with an MDT (a group of people from different professions, such as pharmacists, occupational therapists, and social workers, working together on your care)?
1. If so, when you are involved with this care, would you prefer for all your appointments to be carried out by one person, or continue to see specialists for each aspect?
Thinking about your most recent experience of being an in-patient, how did you find the care you were given and how involved where you in the care you received (were you central to decisions, was your holistic health discussed etc)
What matters most to you when you when you receive healthcare? (For example, receiving assessments and treatment quickly.)
1. Where would you most like to receive this care? At home, a hospital, or in the community?
Do you or someone you care for have experience of having a bone health condition?
1. If so, what are the biggest challenges that are faced in managing the condition? What improvements might you like to see?
“Hospital at home”, also known as a virtual ward, is where a patient may be discharged early and sent home with some simple instructions and equipment to allow them to be monitored at home. For example, you may be asked to take a blood pressure recording every so often.
1. If it was safe to do so, would you rather be sent home and placed on a virtual ward, or remain in hospital to continue to receive care?
Thinking about end of life provisions, do you feel comfortable and able to have a conversations with healthcare professionals.
1. If not, why not?

Older People Deaf Community Group

Do you have regular appointments for any specific healthcare conditions? Yes/No

Do you have to attend lots of different appointments for those specific conditions? Yes/No

Is your care coordinated by an MDT (a group of people from different professions, such as pharmacists, occupational therapists, and social workers, working together on your care)? Yes/No

Do you feel that this was a positive or negative experience? – Thumbs up for positive and thumbs down for negative

Would you prefer for all your appointments to be carried out by one person, or continue to see specialists for each aspect? Yes/No

Have any of you recently attended any inpatient appointments? Yes/No

Did you find the care you were given was positive or negative? – Thumbs up for positive and thumbs down for negative

Did you feel involved in those discussions? Yes/No

When you receive out-patient care which of these three is the most important?

1 – Access via public transport.
1. 2 – Parking near to the entrance/location.
1. 3 – Cost of parking.

Where would you most like to receive care? At home, a hospital, or in the community?

“Hospital at home”, also known as a virtual ward, is where a patient may be discharged early and sent home with some simple instructions and equipment to allow them to be monitored at home. For example, you may be asked to take a blood pressure recording every so often. If it was safe to do so, would you rather be sent home and placed on a virtual ward, or remain in hospital to continue to receive care? Yes/No

Thinking about end of life provisions, do you feel comfortable and able to have a conversations with healthcare professionals? Yes/No