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Contents

Background…………………………………………………………………………………………………..Page 3

Comments from Steering Group members on what they found useful…………………………...Page 4

Carers’ Comments from the morning sessions……………………………………………………….Pages 5 – 7

National Context – The new Dementia Statements…………………………………………………...Page 8

Professionals speaking in the afternoon session…………………………………………………….Page 9

Evaluation of Event…………………………………………………………………………………………Pages 10 – 12

Recommendations ‘Carers’ Voices’……………………………………………………………………..Page 13

Additional Comments………………………………………………………………………………………Page 14

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‘Let me thank you personally for inviting me to the Our Stories conference today. Although I was only present for the first session, found it insightful to have the carer view. I especially valued the discussion groups, which gave me a chance to listen to first-hand accounts of what it means both to be a carer and navigate the system of dementia care. I don’t think I would have found such knowledge otherwise. Thanks’ Quote from Professional

Background

tide - together in dementia everyday aims to empower carers and strengthen their voice through its Development Programme and

also forge a strong relationship with Dementia United through open minded discussions about how carers and former carers of

people with dementia can truly be involved as expert partners in care.

There has never been a better time to forge this relationship and for Dementia United to set the standard of genuine co-production

for others to follow.

One of the many steps in this process was to organise a Carers Led Event for Carers in Central Manchester (the first in England),

where carers’ stories could be heard and open discussions could take place between carers and service providers.

On April 18th 2018 tide held the ‘Our Stories’ Event in Central Manchester, an event designed and organised by people with

experience of caring for someone with dementia, unpaid in the Greater Manchester region. 44 people including current and former

carers living in the Greater Manchester area attended the Event. The day included emotional, candid and inspiring stories from

carers, group discussions, Admiral Nurses pop up clinics and presentations from professionals on topics such as end of life care,

research and the legal rights of carers.

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Comments from Steering Group members on what they found useful

The purpose of the steering group was to enable carers to come together and to use their individual and collective knowledge and

expertise to plan, organise and host a local event, by carers for carers living in Greater Manchester.

Steering Group Members:

Jacqui Canon

Liz Brookes

Marion Coleman

Shahid Mohammed

‘I went away from both the steering group and the event feeling inspired.’

The Steering Group of carers and former carers were vital in the preparation and organisation of the event, with one commenting:

‘We heard very powerful stories at the event and what struck me was the work carers still have to do to be

heard.’

They found the event so useful to hear other carers’ stories and Jacqui Cannon appreciated ‘The opportunity to share with other

carers the value of research and how they can play a vital role by influencing how researchers communicate with carers and people

living with dementia.’

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Carers spoke of their personal experiences on the following subjects in the morning sessions, including

a short film on End of Life Care. These were discussed in facilitated sessions with carers’ comments

below:

A carer’s experience from the South Asian Community

‘Stigma of dementia – no name for it in some communities’

Shahid Mohammed gave a moving account of his experience as a carer for his mother and the difficulties the family encountered within his community. His talk also highlighted some of the perceptions held by professionals such as ‘You look after your own’

Carers in Research

Jacqui Cannon spoke about carer involvement in research which highlighted the fact to carers that ‘Research is not just clinical’. They also learned that there are apps they can use. Her talk not only made carers aware of carer involvement in research, but prompted them to ask for more involvement.

When someone you care for goes missing (Herbert Protocol)

Maureen Winfield gave a moving account of caring for her husband and highlighted the benefits of the Herbert Protocol when someone goes missing. Some carers were not aware of this Protocol and it prompted them to find out more about it with one person commenting ‘Nobody can argue with a personal testament’

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End of Life Care A film was shown of some expertly facilitated sessions by a clinical psychologist with carers and people with dementia talking about End of Life Care ‘No one has ever discussed this, not included in Care Plan’ The film prompted some lively discussion about End of Life as it’s a subject that is seldom discussed, which can leave carers totally unprepared. The general consensus in the discussion that followed was that it made carers think about the need to have those important discussions while they still can, but it needs to be discussed in the right setting at the right time. Some were surprised to find out how many wanted to talk about it, but wanted to know how you find out about it ‘Palliative care - how do you find out about it? No information from GPs.’ ‘Buzzwords were terrifying. You’ve got to know what to ask for.’ It was also pointed out that the carer sometimes hasn’t got the energy to sort things out and may die first.

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Getting Heard Liz Brookes spoke about carers getting heard and their rights in relation to The Human Rights Act ‘We are experts and we deserve to be more valued, and to value ourselves even more.’

Liz’s talk helped to make carers realise that they do have rights ‘Our rights are more important than pledges’ ‘If everything

was being delivered pledges wouldn’t be needed’ (carer). Carers commented that they were drowning in leaflets, with one carer stating ‘The onus is on you (the carer) if you’re given a leaflet’. Carers also commented on the discrepancies between Local Authorities in Manchester and the ‘postcode lottery’ and that carers are often ‘bridging the gap’ ‘There is a great range of support from some areas and appalling from others.’ Carers said that they need a one-stop shop and a long term plan

Other issues discussed by carers

The main themes were the lack of post diagnosis support, the need for more communication and training and the fact that carers

can often feel isolation and guilt.

Carers also highlighted that the needs of working carers should be recognised and that more action is needed instead of

signposting

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National Context – The new Dementia Statements

The new Dementia Statements reflect the things people with dementia and carers say are essential to their quality of life. Grounded

in human rights law, they are a rallying call to improve the lives of people with dementia and to recognise that they shouldn’t be

treated differently because of their diagnosis. These statements were developed by people with dementia and their carers. The

person with dementia is at the centre of these statements. They represent everyone living with any type of dementia regardless of

age, stage or severity. The “we” used in these statements encompasses people with dementia, their carers, their families, and

everyone else affected by dementia. These rights are enshrined in the Equality Act, Mental Capacity legislation, Health and care

legislation and International Human Rights law.

Here are some comments made by carers at the Event and aligned to the Statements:

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

‘Stigma of dementia – no name for it in some communities’

We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.

‘no more postcode lottery’

We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

‘No one has ever discussed this, not included in Care Plan’ (End of Life Care)

We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

‘need more training/communication’ ‘lots of signposting and not enough action’

We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

‘Research is not just clinical’ ‘There are apps you can use’

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Professionals spoke on the following subjects in the afternoon sessions:

Carers - your legal rights, entitlements to be involved and respected as equal partners in care - Carol McBride, Hugh Jones Solicitors Carol McBride from Hugh Jones Solicitors spoke to carers about their legal rights and entitlements. Supporting carers in planning for end of life care and providing post bereavement support - Kim Wrigley, Greater Manchester and Eastern Cheshire Strategic Clinical Network Kim Wrigley, from Greater Manchester & Eastern Cheshire Strategic Network, talked about supporting carers in planning for end of life care & post bereavement support. Time to act: priority to meet the needs of carers from BAME communities - Donna Miller, BHA for Equality in Health & Social Care Donna Miller, of BHA for Equality in Health and Social Care talked about meeting the needs of BAME carers Join Dementia Research – Angela Aldridge, NIHR Clinical Research Network Angela Aldridge (NIHR Clinical Network) talked about why carers in Greater Manchester should be involved in research and how to go about it. Commitment to hearing and addressing the needs of carers in Dementia United – Dementia United Geoff Holliday spoke about Dementia United’s key focus areas

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Evaluations

The reasons why people attended the Event and what they hoped to get out of the day Were their expectations met? Invited to speak but I was interested to hear about the experiences of carers Yes – really useful information about carer’s

experience and about services on offer.

I was invited to speak about dementia clinical research. To connect with carers. Yes

I was hoping to find out how Tide worked and how it aimed to improve dementia care. Yes

To hear about other people’s experiences of caring and how they were able to relate to and get help support from NHS and Social Services.

To some degree but there is very little information available about what is being developed for Dementia Services and no evidence of consultation with carers

I came to get ideas for caring for my husband and to find out any help which may be available of which I am not aware.

Yes, a lot of good ideas and help available.

To support my mum as a carer (for my dad) and to find out more about local networks. Yes

I am the primary carer for my mum who has vascular dementia. I have attended event as I wanted to get advice/guidance re any support out here for me and my mum. I have taken away from today vast amounts of knowledge and leaflets!! To help me, it has been immensely beneficial

Yes, and beyond. I have lots of advice and information that I can put into practice from other attendees, speakers and Admiral Nurses.

As a carer I hoped to get more helpful advice and I. Thank You Yes

Asked by tide as I am a member Yes and more

Working with people with dementia and carers. Information to take back to other carers not able to attend.

Yes very informative

As a student social worker, I want to work in the field of dementia care. I wanted to learn more about carers’ experiences to enable me to develop my practice. I feel that it’s important to value their lived experiences and views.

Yes above and beyond. I’m very happy to have attended. I feel that I’ve learned a lot

I attended as a carer support worker. I hoped to find out more information about the issues facing carers.

Yes definitely

Nicely and gratefully invited by Jacqui Cannon. I work for Sight and Mind CIC, wanted to receive personal experiences for my own knowledge

Yes plus more, really useful day.

Awareness of Dementia. More of an understanding of this condition. Yes, some very good speakers. I have learnt a lot.

Previously cared for my grandfather. Vascular dementia patient. Now currently caring for grandmother and father. Hoped to get support and guidance. Needs met.

Expected a much larger scale – but intimate setting helped to feel at ease. Confident one day a change will come!

Personal family experience of dementia and wanted to get more information about dementia support.

Yes

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What did you like best about the event?

Others experiences and practical examples of help available

Found all of it useful and extremely helpful. Relief that I’m not alone on my journey and there is support for me.

The discussion groups were particularly insightful. I was also greatly interested to learn about the Herbert protocol.

Fast, flowing, useful information. Meeting lovely professionals and carers.

Free and easy. Clear and precise information. Being able to network with the delegates.

The facilitators at the discussions listened and didn’t direct item too much. I met some very pleasant people.

The personal stories presented to the conference and discussions with the groups.

Hearing

The experiences and information workshops. Support agencies.

What were your thoughts on the agenda, was it well balanced?

A majority thought the Agenda was well balanced, commenting:

brilliant

it was very well structured

Definitely. Lunch was lovely. Other comments:

Too many presentations – needed more time for questions.

A longer time for the group discussions would have been good.

To many breaks – not enough time spent on personal interactions from fellow carers.

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What improvements would you like to see at future events run by carers for carers?

Better representation of BME carers. Involvement of other local UCSE organisations who support people living with dementia / carers

Change the discussion groups around a bit

More representatives from statutory services to give carers the opportunity to ask about the development of services and what they think they need (themselves).

What the speakers had to say was very interesting but I felt a bit overloaded with information by the end of the afternoon.

More time for discussion groups. Everyone had lots of interesting things to say and there wasn’t enough time to hear everything. Would be good to see more comprehensive representation of services across GM e.g. nobody evident from Alzheimer’s society, Age UK, Trafford Carers, Hospital Dementia Friends etc.

Nothing at present

Support for carers who aren’t able to leave their ‘cared for person’ to be able to attend.

Bigger screens for power points. However, I am aware that the slides will be provided later. It would just be useful for note taking during the event.

Not sure

Where are the cared for?

More professional setting. 1st carers conference – thought it would be in a more suitable setting.

Scores

How useful people found the event- (scores ranged from 1= Less useful to 10 = Very useful) • All scores were above 6 with 35% scoring 10

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Recommendations - ‘Carers’ Voices’

The main theme from the day for what carers want was primarily better post diagnosis care (including information and support with

End of Life Care), more action as opposed to more leaflets and signposting, with a single point of contact so they don’t have to

keep repeating their story to professionals.

Carers want their rights to be respected and this should be for everyone with no more ‘post code lottery’ where certain areas have

better services than others. Also, they said they wanted to be involved in research and access more training and peer support

which can help equip, educate and empower them to know what services are or could be available to them. It’s often the case of

‘how do carers know what to ask for if they don’t know what’s out there?’. A prime example of this is that many carers had not

heard of Admiral Nurses until the event and the general consensus in the summing up at the end of the day was that carers wanted

Admiral Nurses available for everyone.

Carers need to be heard as they are the experts and this event has demonstrated that they want to be involved as expert partners

in care. They are often the key to good care, which can help to avoid costly crisis situations, but their individual and collective voice

seldom gets a chance to be heard and they often feel they are not listened to. tide has given carers the opportunity to have a voice

with this event and this has shown that they do want to be involved in helping shape services in the Grater Manchester area, but

this involvement needs to be resourced and invested in for genuine co-production to happen and set the standard for others to

follow.

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Additional Comments

“The presentation from Dementia United indicates that they are telling us what they are wanting to do rather than asking and listening to us and what we want!. The energy shifted in the room – people just shut down, it didn’t engage the carers. I am really surprised that they delivered that presentation when they knew that they were addressing carers – the language of a ‘lived experience barometer felt rather dehumanising. We are not part of a weather system It was so heavily jargonised – it felt almost unintelligible” Carer

‘I thought some people were judgemental towards professionals. I am knowledgeable, but would never assume I know more than a carer, and neither would any other member of my team’ .Professional

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