Political point scoring places us all at risk

I’m no fan of this Conservative government and also find myself put off by the local Labour government offer here in Newcastle upon Tyne, United Kingdon. What I see prevents me from supporting Labour nationally. As for the Liberal Democrats, despite what the latest leader says about wanting to help those in need, I can’t forgive them for previously collaborating with the Conservatives.

It is essential that we all work together to tackle the situation we are now in, but these politicians are only interested in looking after themselves. How many more people have to suffer physical and mental injuries before we get some real visible leaders with a credible recovery plan? 

I see many forgotten citizens providing support and assistance to each other while the politicians and public health experts argue amongst themselves and try to outmanoeuvre each other. I feel that the political class of 2020 are not up to the job of dealing with Covid-19. Many citizens have been left to fend for themselves and are politically disenfranchised by these dysfunctional actors.

I don’t know how those in charge both locally and nationally can sleep at night!

David Black, Newcastle upon Tyne

Letter Ends

David Black Foundation UK – 2020 onward focus - Dementia discrimination:

Nobody with dementia should be asked to pay to be looked after. We are seeking funds to assist those with dementia who need to reside in a care home. In addition, we seek to provide support and assistance to individuals at risk from dementia as they access health, social care and other products and services.

If you have dementia and require a care home or nursing home place it needs to be paid for. Three broad categories of funding may be available, they are dependent on the circumstances of the person with dementia and can also be dependent on the persons current family and any current carer.

At present residents of these homes fall into one of the following three funding methods:

Local Authority Funding - currently about 40% of places are funded in this way.

Other methods of funding - currently about 40% of places are funded in this way.

NHS Continuing Healthcare Funding – currently about 20% are funded in this way.

For over 20 years, governments have undertaken numerous reviews and have had many reports written about how to solve the issues regarding a long-term solution of funding care for those with dementia and other serious medical conditions. Despite the three main political parties having a go at solving this issue, they have all failed to find a solution both at national and local levels of government.

Dementia charities keep raising concerns, writing reports and carrying out numerous campaigns, but no solution is forthcoming.

As a small foundation our aim is to bring forward potential alternative solutions to improve the funding of care for those with dementia. We also wish to improve the overall health and care services available for both those with dementia, and families and carers. We propose to do this by focusing on four activities:

Advocacy

Using my experience of the Lasting Power of Attorney (LPA) application and registration process I have assisted many local families who were seeking to have an LPA in place but were not seeking expensive legal advice with the practicalities of completing the application and registration process.

Innovation

Taking part in workshops and discussions, such as at the UK’s National Innovation Centre for Ageing (NICA) a world-leading organisation, created with a ￡40 million investment from UK Government and Newcastle University, to help create a world in which we all live better, for longer.

Research

Participating as a Patient Public Involvement representative on research projects, including Newcastle Dementia Care Leaders Toolkit realist evaluation of patient outcomes (DemCLIP), and Primary care led post diagnostic Dementia care (PriDem). Working with VOICE-GLOBAL.ORG.

Support

Working with a group of elders who are mostly 80 years plus in age, including supporting a person with mild cognitive impairment. It is mainly very hands off on my part, with individuals in the group approaching me for assistance, advice and help as and when they need it.

Regarding funding, the area of initial focus will be those with dementia that have been ultimately unsuccessful in obtaining substantive NHS Continuing Healthcare Funding, don’t yet qualify for local government funding, and have been left to find other methods of funding care in a care home. This group of individuals is smaller than some of the other groups seeking funding, but still represents a significant range of people requiring care home funding. 

The process of applying for NHS funding is time consuming, involves dealing with numerous faceless organisations and can feel quite a draconian process if undertaken on your own and without significant assistance from costly specialists in Continuing Health Care Funding. Historically, it is not unusual for the process to take many years to complete and we are aware of a case ongoing eight years after the death of the resident.

Further details regarding various work I am currently involved with is outlined below.

Notes for Editors

My main priority is to my mum who has Alzheimer's Dementia, no longer has capacity and is cared for in a local care home. Whilst visiting I talk with many of the residents who look out for me when I visit mum.  I also speak with the staff and other visitors during my visits. I am pleased to report that my mum is happy and settled and the staff enjoy looking after her. They provide her with good care.  

I work with a group of elderly people in my local neighbourhood on an ad-hoc basis and provide help and assistance to them with everything from gardening and shopping through to legal and financial matters. In addition, I am interested in elders who are not always well represented, such as my mum. 

I've got a background in the administration of government funded legal advice and assistance and spent some time before the funding of scheme ended as a Subject Matter Expert and User Acceptance Testing, mainly working in the London Head office with system analysts, programmers and developers who were trying to computerise paper based systems. 

I also spent time working for NHS England investigating clinical complaints mainly in primary care settings (GP's Dentists, Opticians and Pharmacies). Then I became a full-time care giver for my mum. 

When it was decided that mum needed 24 hour care in a nursing home and following many unsatisfactory experiences with both the health and social care systems and government services in general, I decided to try to work with organisations to make things work better for others. This is what I now do.

I have taken part in some user testing regarding the Department of Work and Pensions future state pension service. I also gave another researcher the benefit of my rather disappointing experience of Universal Credit and how I navigated the benefits system on behalf of my mum, such as access to Cares Credit, Attendance Allowance and Cares Allowance. Explaining about the assistance I was given by Newcastle City Council and why I decided not to take part in a full assessment of welfare benefits by one of the council’s staff.

Via membership of Newcastle Elders Council I got involved with a video being made by a company called I-Motus on behalf of Fujitsu regarding government services now and what citizens would see the future systems to be like in 13 years-time. This was to be shown to senior civil servants and government with a view to discussing the future of public services. I also wrote an article for the Newcastle Elders Council magazine regarding the Citizens Computer Network of free computer access at local libraries.

I am a member of Newcastle University's VOICE-GLOBAL.ORG organisation. VOICE is a unique organisation, comprising a large network of citizens across the UK and internationally. Members contribute immense insights, experience, ideas and vision to identify unmet needs and opportunities, to drive innovation on ageing and improve health research.

In 2019 I took part in a Panel discussion with 3 other VOICE members in London to support the ZINC Accelerator Event - Technology Session. The Zinc Programme brings together 50 bright minds for 9 months to find their co-founders and build new ventures. This is year 3 of the programme and the mission for this year related to adding 5 more high-quality years to later life.

I took part as a co-facilitator in Super Network North East Innovation in Ageing Accelerator Program Workshop. This was concerning the challenges and opportunities in an ageing society. I got involved with this following attending a workshop at Venture Fest 2018 regarding businesses and the health and social care landscape in the region. Venture Fest North East is a free, full-day event focusing on how businesses can grow through innovation, designed to connect businesses, corporate's, investors, academics and people with specific expertise in innovation. I have continued to be involved in the Ageing Accelerator Program providing feedback via events organised by VOICE and the National Innovation Centre for Ageing.

As a member of VOICE - Research Support Group I take part in providing guidance to researchers. We split into small groups to provide medical researchers with advice and guidance regarding how best to communicate to potential lay participants and families the aims and objectives of a specific piece of research.

I am a member of three Patient, Public, Carer involvement groups at Newcastle Hospitals: APEX - Advising on Patient Experience, PIMS - Patient and Public Involvement in Musculoskeletal Services and the Oral and Dental Patient, Carer and Public Involvement group. I am also involved as a reviewer of information and documents for the hospital Patient Information Review Panel.

My interest in Health, Care of the Elderly and Ageing is wide ranging. I take part as a volunteer in research across Newcastle University including some brain testing work at the Institute of Neuroscience. I attend public and patient/carer meetings at the Newcastle Gateshead Clinical Commissioning Group (CCG), Newcastle Hospital Trust, Newcastle University and Newcastle City Council. I am a public member of Newcastle Hospitals, North East Ambulance Service and Northumberland, Tyne and Wear NHS Foundation Trust.  

I take part in Newcastle Disability Forum as a member of its Disability Advisory Group. This is facilitated and supported by Newcastle City Council and Disability North and allows me to find out about both ongoing work and new developments in the Newcastle area and beyond. By sharing my experiences with the group, I aim to make a difference to the processes and services offered.

In addition, I take part in activities that help in the development and learning of university students and attend Newcastle University regularly and work with various students. As a volunteer patient at Newcastle Dental Hospital I have worked with a group of the Dental School staff and students, they provide treatment to me and I provide my time, commitment and feedback on my treatment. I work with first, and second year medical students during the Clinical Skill teaching part of the course. They practice physical examination skills and I provide comments and feedback on how they treat me as a patient.

Through Newcastle University and its Knowledge Exchange Seminar Series I am exploring how as a citizen I can make an impact on policy and decision making. I also take part in the Bank of England’s Citizen Panel as a member of the public who is interested in sharing my thoughts and asking questions about the bank’s role and responsibilities.

Having taken part in many events organised by the Not Equal Network at Newcastle University’s Open Lab, I share my views and opinions regarding the work they do in collaborative research and innovation for technology that supports social justice. As part of Not Equal Network’s 2020 commissioning process I have joined Not Equal’s Virtual Community Panel. 

As part of the UK government’s Healthy Ageing Grand Challenge I undertook assessment of funding applications and reviewing proposals for the Healthy Ageing Catalyst Awards 2020. Assessing them on the basis of their potential importance, timeliness and effectiveness in enabling the UK to meet the goal of ensuring people can enjoy five extra healthy, independent, years of life by 2035 whilst also narrowing the gap between the experiences of the richest and poorest. Some of the applications related to dementia and care settings.

I am a member of the Care Home Interest Group (CHIG) working with researchers at the Population Health Sciences Institute at Newcastle University. In addition, I take part as a patient/public representative on three ongoing research studies:

The PriDem Patient and Public Advisory Board based at the Institute of Health and Society. The full title of this research is: Primary care led post diagnostic Dementia care (PriDem): developing evidence-based, person centred sustainable models for future care. The research is being conducted by a multi-disciplinary research team lead by Professor Dame Louise Robinson at Newcastle University.

IMPACT Study Patient and Public Involvement Panel based at the School of Dental Sciences, Newcastle University. The full title of this research is: Investigating Problem Orientated Patient Pathways, Toothache to Treatment.

Recently I became the PPI Co-applicant on a study entitled: Newcastle Dementia Care Leaders Toolkit realist evaluation of patient outcomes (DemCLIP).  As PPI lead for this study, I will ensure that the views of patients and carers are an integral part of this research. As a member of the research team, I will lead the patient and carer reference group, providing an essential link between the reference group and the research team. This research is being led by Dr Clare Abley, Nurse Consultant Vulnerable Older Adults, The Newcastle upon Tyne Hospitals NHS Foundation Trust and Honorary Clinical Senior Lecturer, Newcastle University.

As you will appreciate this all keeps me busy and only represents some of what I am involved in.  

Please feel free to contact me if you wish to discuss matters further.