We are an independent organisation that helps people of all ages who:
- need information about health or social care services
- want to see services improve
- need help to make a complaint or raise a concern about an NHS funded service
Everything we do is free to people who live in the Southend on Sea area.
As a part of our remit to facilitate the involvement of patients, service users, carers and the general public in the design and commissioning of health and social care services, we are running a series of public events locally on specific themes. Our events are intended as opportunities for people to come together, share thoughts and ideas, hear direct from commissioners and providers of services, ask questions and have their views heard.
Our dementia event
For this event on Thursday 16 January, we invited representatives of Southend Borough Council, South Essex Partnership University NHS Foundation Trust (SEPT) and the Alzheimer's Society to come and talk about dementia from both a health and social care perspective. We asked them to prepare presentations on 'living with dementia', 'the importance of early diagnosis' and 'dementia services: past present and future'. See 'downloads' at the bottom of this page
We then asked our speakers to sit as part of a panel and address questions and concerns raised by our audience.
We would like to thank everyone who registered and attended the event. That you could take the time out from your busy lives to support us was inspirational and showed how committed local people are to their health and social care services. We would also like to thank Jo Dickinson, Nicola Short and Cathy MacBride for the interesting and informative presentations they gave, and for staying throughout the event to participate so openly in the 'question time' discussions.
In this report we have reproduced the slides from the presentations from our dementia event, along with brief notes of the points raised in our question time discussions. If after reading you wish to discuss any of the issues raised further with us, please contact us. Similarly, if you would like any messages passed on to any of the speakers at the event, please let us know.
On the day
42 people attended our dementia event, which began with Graham Carey, member of our advisory board, who welcomed the speakers and attendees, introduced the event and ran through the 'housekeeping'. Jonathan Keay, manager, Healthwatch Southend, then gave a brief explanation of the purpose and intended outcomes of this and future events.
Michelle Goddard, information and advice worker, Healthwatch Southend, was on hand throughout the event to offer advice and information about any aspect of the local health and social care landscape, such as where and how to access services, and people's rights and options.
In addition to Michelle's information and advice stand, information stands were available for people to visit during registration and in the break. These were provided by:
Castlepoint Association of Voluntary Services (CAVS) befriending schemeCAVS was formed in 1994 to provide support and guidance to voluntary and community organisations within Castle Point. From the outset they operated a volunteer centre helping to match organisations and potential volunteers.
Peaceful PlacePeaceful Place is a small but growing charity supported by and serving people in South East Essex. It aims to improve the lives of people with young onset dementia and those that care for them. At the heart of its services it operate a day centre from its base in Rochford which focuses on providing active, stimulating and person centred activities in a safe and friendly environment. Peaceful Place also provides advocacy services to people living with young onset dementia, providing much needed support to individuals as well as supporting groups for carers and those with a dementia diagnosis.
Papworth TrustPapworth Trust is a leading disability charity whose mission is to support disabled people to have equality, choice and independence in their lives. Its work includes:
- providing a range of high quality services for disabled and disadvantaged people
- providing advice for disabled people and their families and carers through its information centre
- campaigning for changes that disabled people want
Alzheimer's SocietyAlzheimer's Society is a membership organisation, which works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland. Many of is 20,000 members have personal experience of dementia, as carers, health professionals or people with dementia themselves, and their experiences help to inform its work.
Southend Borough CouncilSouthend Council are launching an awareness raising campaign to improve dementia detection rates, reduce stigma and improve outcomes for people with dementia. It is also working to promote dementia friends and dementia champions in Southend, and to develop our borough into a dementia friendly community.
We would like to extend out thanks to our stallholders, all of whom showed their willingness to stand shoulder to shoulder with us, brought valuable information and contributed to the discussions. We believe that only by everyone working together can we effectively represent the views of people, and use our collective knowledge and contacts to influence positive change.
'Question time' discussion
Our panel of speakers, Nicola Short, Kathy McBride and Jo Dickinson, sat as a panel at the front of the event, in the style of the BBC's Question Time. The discussion was facilitated by Graham Carey, our event chair for the day and member of our advisory board.
The following represents the notes we were able to take during the discussion. We have endeavoured to make the notes as complete and accurate as possible, but recognise the difficulty involved in accurately recording live and animated debate. If you feel we have misrepresented any aspect of the discussion and points raised, please get in touch and let us know.
"There is a lot of advice and information, but we need someone from social care to take action and do things like putting carers in place. They say they can do this and that and nothing happens. All the changes in local government have meant the person you were dealing with has changed jobs and it goes on."
"There is a working couple, one of their parents was living alone, the parent then came to live with the couple, which meant time had to be taken off work. Care in the home is not widely available. Carers will pop in for 15 minutes. This is a difficult area."
"A lot of GPs will not talk to you about concerns about a close relative when you don't have written permission. The GP will then want your involvement when that relative has become a difficult patient causing difficulties in the surgery. Social care promise lots of things. They don't see people as human beings. Visits from carers are more like five minutes. There's not enough care in the home."
In response to the issue of written permission, Graham Carey referred to Lasting Power of Attorney, giving a brief explanation of the legislation.
"My mum has worried about dementia because she has seen other family members have it. When there were concerns about possible dementia, I saw the GP alone and prepared him for an appointment with my mum – this worked."
"I wrote notes and a letter and gave this to my doctor."
"Health and social care need to be more 'joined up'. A patient can come in through A&E and one health service will deal with one bit and social care deals with another bit. Need to work together."
"If we are going to have strategic cohesion, this has to be more than health and social care services and should include the community and voluntary sector. Health and Social care services need to understand the whole network of what is available as people are individuals with unique needs."
"There seems to be enormous gaps. There is currently an eight week waiting list for the memory clinic even when the local authority has advised that there is an under-diagnosis of dementia in Southend. What is happening to bring this list down? How many memory clinics are there? Is it just Southend Hospital and the Harland Centre?"
Nicola Short responded: "SEPT has several memory clinics across south east Essex. You can be referred by your GP, through the Alzheimer's Society or self-referral.
"You stress the importance of early diagnosis, but there is an eight week wait for an appointment with the memory clinic."
Nicola Short responded: "Referrals are coming in but we are aware there are lots of people in care homes who are undiagnosed. We should see people within six weeks but our waiting list is now eight weeks. In the meantime, we get the scans and blood tests done which saves time when we do see them."
"What is the interface between the Memory Clinic at the hospital and the SEPT clinics?"
Nicola Short responded: "All referrals come to the Harland Centre who then either see them themselves or refer to Southend Hospital. The criteria are that if they have serious health conditions or medical history of vascular disease they will be referred to the hospital. Under 65s go to Southend Hospital in case there is a neurological problem. But under 65s with a history of mental health problems stay with SEPT. Yearly checks are done at the hospital and six monthly checks are done at home by the community mental health team."
"You have spoken a lot about the importance of early diagnosis. What about the people living at home? Are the resources there to support people in their own homes? Have you got a huge mountain to climb?"
Jo Dickinson responded: "We are looking to see the best way to do this, but we're not looking at huge mountains and we are progressing gradually. At the moment our budgets are tied up with older people in general. It is about rearranging services and shuffling resources."
Graham Carey added: "It is about moving resources from one place to another – it could be a 'bumpy road'."
"Self funders can fall through the net as no one appears to monitor whether they spend money on their care needs."
"Public events by health services are often held at inconvenient times that don't suit workers, especially the ones travelling to London."
"My mum has vascular dementia and was admitted to Southend Hospital during the Christmas period. She was given a room on her own and I was scared to leave her as she kept wandering. She walked right to the doors and happened to be spotted by someone. The staff were not watching or caring. She also lost her hearing aids on Southbourne ward. The food diary was inaccurate and my mum got pushed from one ward to another."
"There is an organisation called Dementia Adventure, a community interest company based in north Essex that aims to get people with dementia out into nature and provide holidays that are tailor made."
Evaluation of event
Dementia event feedback forms: statistics and comments (overview)
19 evaluation forms were received, with 18 respondents willing to be added to supporters list (although some may already be on it).
How did you hear about this event?
- E-mail from third party 10
- Healhwatch Southend e-bulletin 6
- Word of mouth 4
- Newspaper 3
One respondent heard via letter from Healthwatch. Several respondents gave more than one answer.
Why did you attend this event?
- For information 15
- To support Healthwatch 8
- Networking 7
- Speakers 4
- Personal growth and development 4
Several respondents gave more than one answer.
Were you able to get what you wanted from attending this event?
- Yes, absolutely 12
- Yes, partly 6
1 respondent did not give an answer.
Overall satisfaction with this event
- Very satisfied 11
- Reasonably satisfied 8
Registration process and communications:
- Very satisfied 12
- Reasonably satisfied 6
(1 missed response)
What was good about this event?
- Speakers: Knowledgeable and a good mix. Event was well-presented.
- Information and networking: Enabled attendees to find out about services and network with other organisations
- Time: Provided for discussion and input
What could be better?
- More meetings, for more discussion and networking
- Recognition that there is still much to do
What one change to dementia services in Southend would you like to see?
- More support for carers
- More community nurses/home visits
- More joined-up services
Comments in full
What was good about this event?
- "Very well-presented and co-ordinated. All three speakers were excellent."
- "Broadly based."
- "Good mix of speakers."
- "Meeting and finding out about services."
- "Positive thinking."
- "Range of information on services. Networking and contacts."
- "I can hopefully now source some help for my father."
- "Airing views to senior staff."
- "Alzheimer's Society information."
- "Knowledgeable speakers with some public interaction."
- "Well-structured, flow of input from speakers good. Scope of topics covered was good plus provision of support information for carers and dementia patients. Adequate time for input and discussion."
- "Expert knowledge – organisational and quasi-clinical."
- "Learning a lot about the subject."
- "Information and networking. Great chair who facilitated the discussion very well."
- "The time to network with other organisations."
- "The speakers were excellent. Really helpful and felt they were very knowledgeable in their field of work."
What could be better?
- "More time for questions."
- "More information about dementia as an illness. Carers speaking about their experiences."
- "Make SAVS dementia-friendly."
- "The speaker who did introductions and said he was uncomfortable using the microphone, needs to deal with that so that needs of the audience who had requested use of microphone were met. Other speakers didn't use it either."
- "No cut-off between SBC and Castle Point – we use a lot of the same services and Essex Healthwatch is not forthcoming."
- "Workshop towards end of symposium to bring out attendees' views of going forward, for information and use of the speakers' organisations."
- "More meetings."
- "Visibility of screen – presenter standing in front. Single issues rather than strategic approach – if people have concerns, the issue is have they told the hospital/fedback to Healthwatch?"
- "Q&As should have been at the end of each speaker's piece. As it was it got muddled."
- "A greater recognition there is still much to do. On a practical note, the coffee was cold!"
- "More time and more organisations during the networking break."
What one change to dementia services in Southend would you like to see?
- "More support for those who care for a loved one who has dementia."
- "Quicker diagnosis. More awareness of the local memory clinic."
- "Greater health/social care/third sector integration."
- "More community dementia nurses."
- "More investment."
- "Help finding an appropriate care home."
- "To increase the awareness that people with memory problems or other mental incapacities get the necessary support when given the funds to care for themselves in their own home. They are likely to become an employer and need a nominated agent who can make the decisions for them, and understand the legislation."
- "More joined-up services in health and social care. Investment in services (particularly frontline services) as LAs are experiencing cuts in services."
- "No fifteen minute calls."
- "Better communication and data-revealing by hospital memory clinic to independent specialists."
- "More home visits."
- "More information being advertised about where people can go initially for help and advice."
- "Help with how to gain power of attorney without going through solicitors."
- "More resources to support those diagnosed with dementia. Current levels are scarcely sufficient and the situation will get worse."
- "Services that are more responsive to the changing needs of people with dementia and those caring for them."
- "Something provided along the lines of 'Dementia Adventure' to slow down the onset of the condition."
- "Given the surging increase in age-related dementia, establishment of (teams of) nurses/carers with specialist awareness – similar to Macmillan nurses."
Pledges from attendees:
- I will become a 'dementia friend' when a suitable time is available.
- Highlight the information available to our advisors and Gateway assessors so they can better support people with dementia and their families.
- Mention a befriending scheme near the borough that will hopefully spread into nearby areas.
- Raise awareness at other meetings.
- Advertise the Alzheimer's Society.
- I would like to become a Dementia Champion, and refer more people to the Alzheimer's Society.
- I am a Dementia Friends Champion, and will spread the word as far as I can.
- Promote early diagnosis to our clients.
- Put carers at heart of strategy.
- I intend to share all the information I received today with friends and other U3A members who run groups to inform and help members in these areas (dementia care).
- We at Healthwatch Southend have committed to all become dementia friends and appoint a dementia champion within our staff team.
We would like to thank everyone who attended our dementia event. Whether public or professional, your openness, involvement and willingness to think constructively made the event a real success for us. We hope that this report will help inform the ongoing development of services and initiatives to support people with dementia in Southend.
We genuinely believe events of this kind are a great way to facilitate discussion that is targeted on specific issues. They provide opportunities for learning and information sharing but, most importantly, give people the chance to air concerns and questions, and have these answered by key people in our local services. In this way we can break down barriers of communication and learn to listen to each other without preconceptions or prejudices.
There is nothing that cannot be improved if people have the will to cooperate and share ideas. If you are a commissioner or service provider, please read comments in this report carefully and think about how you might be able to contribute to positive change.
Many thanks for your continuing support,
Your local Healthwatch team