Minutes of Worthing Dementia Action Alliance Open Meeting and AGM 2019 on Tuesday 3 December 2019 at Abbeyfield, Ferring, West Sussex
Apologies were received from: Dawn Steady (New Tyne); Dawn Fairbrother (Alzheimer’s Society); D Bikram Raychaudhuri (Clinical Lead for dementia NHS Coastal WSCCG); Sir Peter Bottomley;
The Chairman, Cllr Bob Smytherman, welcomed everyone to the meeting and confirmed that all candidates standing for West Worthing at the General Election had been invited to attend the AGM and respond to three questions previously sent to them.
These were the questions posed to all candidates:
- Many people diagnosed with dementia and their families have to pay over £100k to cover the cost of care from the time they are diagnosed which is completely unacceptable. What will your party do to address these catastrophic costs?
- Dementia is a terminal disease of the brain, just like any other terminal disease. What will your party to do to ensure that those diagnosed with dementia have all their care costs paid for by the NHS, which is only fair and equitable?
- Carers save the NHS and government millions of pounds each year; many suffer great physical and emotional stress because they do not get the help and support they need and deserve. What will your party do to ensure that carers receive a high level of free help and support when they need it?
Councillor Jamie Bennett (Liberal Democrat) had responded to the questions and would be attending the AGM; Jo Paul (Green Party) had responded to the questions but not to the invitation to the meeting; David Aherne (Independent) had not responded at all; Sir Peter Bottomley had sent his apologies but had not responded to the questions; Councillor Dr Beccy Cooper (Labour) had responded to the questions and was expecting to attend.
Whilst waiting for Jamie to arrive Lynsey Trans (WDAA Coordinator) went through the responses she had received to the three questions from the three candidates.
This was the response from Jo Paul (Green Party).
“Thank you for raising these important points about dementia care. No-one should be expected to fund the care they need simply because they are unfortunate enough to suffer from dementia, and carers need and deserve our support.
The uncertainty and delays over social care have gone on too long. The Green Party would ensure an additional £4.5 billion a year is provided to local councils to provide free social care to those people over 65 who need support in their own homes. This model has been in place in Scotland since 2001 and has helped millions of people be cared for in their own homes – it’s time to extend this right to free home care to pensioners in England.
The Green Party would increase funding for the NHS by at least £6 billion per year each year, until 2030 (a 4.5% increase on the 2018/2019 NHS Budget), and a further £1 billion a year in nursing higher education, allowing for nursing bursaries to be reinstated. This will constitute a programme of sustained investment, bringing spending of health services in the UK up to northern European averages.
The increased funding that will enable this will be complemented by a devolution of healthcare, with communities given more control over health services and individuals and their carers involved in creating treatment plans.
We value the contribution carers make to those they care for and to society in general putting in long hours of work caring and supporting the people who depend on them. We want to support them as they support their loved ones. As part of the Green Party’s Green New Deal we will introduce a Universal Basic Income with a payment of £89.00 per week to every adult. We would continue to pay a full Carers Allowance to carers, on top of the UBI payment. This means that a full-time carer would continue to receive their £3,200 Carers Allowance, plus £4,630 in UBI payments a year.
Appropriate emotional support should be available for carers allowing them to take a break when they need to and to have someone who they talk to about their own well-being. Families must be given help and guidance to ensure they receive all the financial support they are entitled to. We will provide this assistance.”
These were the supplementary questions we wanted to ask the Green Party and would forward them on.
- Would the Universal Basic Income payment apply to carers over 65 who are not entitled to the Carers Allowance?
- Would the free social care for the over 65’s still living at home be applied to those in care and nursing homes.
- Would dementia be classed in the same way as any other terminal disease and treated by the NHS rather than the mental health teams?
- Would the emotional support to be given to carers mean that respite care would be paid for?
On the arrival of Councillor Jamie Bennett (Liberal Democrat) he was introduced by the Chairman who declared an interest since he was acting as Councillor Bennett’s election agent.
Councillor Bennett (Liberal Democrats) answered the questions as follows:
The Liberal Democrats do not believe that anyone should sell their home to pay for their care and that the existing system needs to change to ensure that. There would be a cap of £200k. This change would be implemented by the end of 2020. When questioned he agreed that this was actually the amount of cash assets that someone would have to exceed before they paid for care but there was some doubt and he agreed to clarify this if the question could be emailed to him. He also agreed that if twins with exactly the same assets and cash savings were both diagnosed with a terminal illness, one being cancer and one being dementia, only the twin with dementia would be expected to pay for their care. He made no comment on the unfairness of this.
The funding for the NHS and mental health services need to be brought together and £1billion would be ring fenced for dementia care. This would be paid for by increasing National Insurance by 1p and implemented by the end of 2030. When questioned he stated that because the NHS and mental health services did not always work together and that the NHS was able to procure more of the available funding it was necessary to embark on what he agreed would be a massive restructuring process to mould them into one organisation. He accepted that whilst those working in dementia services in West Sussex felt that the NHS and mental health services worked well together and just needed better funding for the latter he said that this was not the case nationally.
He agreed that carers were not supported properly and that a Liberal Democrat government would introduce a carer’s passport which would entitle carers to such things as early appointments with their GP etc. It would also give carers free access to support services such as those offered by Carers’ Support. When questioned he wasn’t able to elaborate on this matter nor could he confirm how it would be funded or who would administer the system. Neither could he say how carers in West Sussex would benefit especially when he was told that Carers’ Support services were already free. However, he agreed to clarify this if the question could be emailed to him.
He was asked what the Liberal Democrats would do to improve the status and pay of care workers; they were not viewed in the same way as nurses and caring in a care / nursing home wasn’t looked upon as a good career choice. He was also questioned on the possibility of raising the level of Local Authority payments for care services which at present were too low for companies to deliver the level of care required. Also care companies should also be zero rated for VAT and not be exempt and they were losing out financially. Councillor Bennett agreed that the perception of care workers together with their pay structure needed to be improved along with the rate of Local Authority payments. Regarding the question of the VAT rate he agreed that this needed to be fixed. There were no assurances from him that any of this would be on the agenda of a Liberal Democrat government.
The Chairman thanked Councillor Bennett for attending the meeting and answering the questions put to him.
On the arrival of Councillor Dr Beccy Cooper (Labour) the Chairman introduced her and she went on to answer the questions as below.
Many people diagnosed with dementia and their families have to pay over £100k to cover the cost of care from the time they are diagnosed which is completely unacceptable. What will your party do to address these catastrophic costs?
I agree that this is completely unacceptable. My Grandma, who died this year, had Alzheimer’s for many years – her care home in the North East was outstanding and the staff were exemplary, but the cost of this was very high.
The Labour Party will build a National Care Service for England. We will develop eligibility criteria that ensures our service works for everyone, including people with complex conditions like dementia. We will ensure no one needs to face catastrophic care costs of more than £100,000 for the care they need in old age, which we will underscore with a lifetime cap on personal contributions to care costs.
Dementia is a terminal disease of the brain, just like any other terminal disease. What will your party to do to ensure that those diagnosed with dementia have all their care costs paid for by the NHS, which is only fair and equitable?
You are absolutely correct that dementia, like other mental health issues, has not received parity of esteem. A Labour Government will provide an additional £1.6 billion a year for mental health services, ensuring access to treatments is on a par with that for physical health conditions.
Carers save the NHS and government millions of pounds each year; many suffer great physical and emotional stress because they do not get the help and support they need and deserve. What will your party do to ensure that carers receive a high level of free help and support when they need it?
Carers, both paid and unpaid, are the backbone of our health and social services, and we must value and support them in the vital role that they play. Our National Care Service will ensure that care is delivered for people, not for profit. Labour will invest to end the social care crisis, end 15 minute visits and provide care workers with paid travel time, access to training and an option to choose regular hours. For unpaid full-time carers, we will increase the Carer’s Allowance.
Supplementary questions to Dr Beccy Cooper:
Q: What would be the timescale in setting up the National Care Service?
A: It was hoped that it would be set up within the first 12 months of a majority labour government being elected. She was sure that this would not just be another layer of bureaucracy but would ensure that the NHS and other agencies worked together so that the system was not fragmented.
Q: Is the £100k the maximum anyone would have to pay or is that capital and/or assets?
A: Dr Cooper was unable to give the exact figures contained in the manifesto but agreed to supply these if this question could be emailed to her. There was some confusion about the cap on care costs or amount people needed to contribute. However, she did confirm that dementia would not be dealt with under the NHS like any other terminal disease and that some contribution towards a person’s care would still be required. When questioned further as to why this was she said that the dementia journey was different to that of other terminal diseases and that people lived for a lot longer with dementia.
Q: If the money for Dementia is not ring fenced then it will just disappear into the mental health pot
A: Dr Copper confirmed that money would be ring fenced and that the National Care Service would ensure both the NHS and other services were working together.
Q: Where is the money to come from to fund the changes and the increases in budgets?
A: Dr Cooper explained that the large amount of money lost through businesses and the wealthiest citizens avoiding paying their taxes would go towards the additional funding together with an increase in corporation tax. She would be pleased to give a more detailed explanation if the question could be emailed to her.
Q: The response to the questions about carers related mainly to care workers not unpaid family/friends that care for those living with dementia.
A: Dr Cooper agreed with that statement.
Q: What about the carers who are over 65 who don’t receive the carers allowance?
A: Dr Cooper confirmed that carers over the age of 65 would receive a Carers Allowance and that she would be pleased to give a more detailed explanation if the question could be emailed to her.
The Chairman thanked Dr Cooper for attending the meeting and responding to the questions.
We have added a BBC South East video to support the above. Many thanks to the BBC for their use of the video and to Lynda Fulford who was interviewed for the piece.
Nominations for WDAA Steering Group:
The Chairman proposed that he would read the names of those nominated and unless there were any objections he would ask that they be agreed en block. This was acceptable to the meeting.
Nominations: Bob Smytherman (Trustee West Sussex Mind); Carol Barber (Offington Park Methodist Church); Maureen Bacon (carer); Julia Johnson (Fine Marketing); Elena Riseborough (Dementia Service Manager Sussex Partnership Foundation Trust); Ian Macara ( Bennett Griffin Solicitors); Jacqui Swindells (Abbeyfield Ferring Society); Julie Whittingham (Dementia Programme Manager West Sussex Coastal CCG); Kimberley Roper (Dementia Support Worker Carers’ Support West Sussex); Lynda Basford (carer); Dawn Fairbrother (Dementia Friendly Coordinator Alzheimer’s Society); Tim Wilkins (Service User involvement Officer Alzheimer’s Society);
Nominations proposed by Lillian Birchall
Seconded by Jacqui Swindells
All in agreement.
The annual report was presented by Lynsey Tran, Dementia Friendly Worthing’s Co-ordinator. You can download the report.
The financial report was presented by Jacqui Swindells. You can download the report.
Aims for the next year
Jacqui Swindells confirmed that in the New Year she would relaunch a funding application for finance that was refused last year. It was appropriate to do this as the WDAA had a better profile and more experience both which were lacking last time this funding was applied for. In answer to the question, Jacqui confirmed that the WDAA needed about £30k per year to fund both posts. Lynsey Trans explained that action plans for schools, GP surgeries, transport, and housing needed more than a year to plan, put into practice and then follow through so funding for 3 years was really important rather than for just one year. It was agreed that without a paid coordinator, especially Lynsey with all her knowledge, experience and passion, the WDAA would not exist because despite the willingness of volunteers it would not be possible to take on all of Lynsey’s activities.
Tim Wilkins reminded everyone of the Alzheimer’s Carol Service being held on Friday 6th December at the Salvation Army Citadel, Worthing.
Lynsey Trans was thanked for the amazing work she had done over the past year, for all that she had achieved on behalf of the WDAA and for her infectious enthusiasm.
The meeting ended at 6.00pm