Post-Diagnosis Support

This article will be gradually updated as I learn more.

If you talk to people reader, the overwhelming comment is the lack of a timely diagnosis, support and signposting of services from seeking a diagnosis, through the point of diagnosis and beyond.

Commonly there is a feeling likened to stepping off a cliff into a dark hole.

There is now a recognition of the importance of a timely diagnosis followed by post-diagnosis support, from the point of diagnosis, for the person living with Dementia and their family/carers.

The World Health Organisation has a Global Action Plan 2017-2015 for Dementia.

During the Alzheimer’s Society’s Dementia Action Week, Dementia Alliance International announced the formation of the Global Rehabilitation Alliance.

The Centre for Economic and Social Research in Ireland have published a report on Post-Diagnosis Support for People with Dementia and their Carers

Although my wife and I, haven’t had support from the NHS, apart from my Neurologist  or local Council, which should be equal to that of other Chronic Diseases, we received important support and empowerment from the A Good Life with Dementia Course, from my friends and organisations on Twitter and from Voluntary organisations like the Alzheimer’s Society, DEEP UK, Young dementia UK, Dementia Cafe’s et all.

Stepping Out of the Dark Hole

As 2017 came to a close and endless googling,  I turned to Twitter to see what I could learn about my new world of Dementia.

In January I took part in my first research study and Twitter became a source of information and support, which I am truly grateful for. Twitter was an empowering experience, which made me realise that the media perceptions of wrinkly hands and suffering didn’t apply to me and reignited my passion for good quality person-centered care, which had been my ethos throughout my time working in care.

Some of the “new” initiatives I read about made me smile, such as #EndPJParalysis, something I had practiced since my first day working in a Care Home nearly 20 years ago. As the years went on, I am became an advocate for patients, enabling them to speak out and stand up for their rights and challenging Doctors and doing the best I could for the people I cared for.

Another turning point was at the beginning of April, I began to read about the “A Good Life with Dementia” course, which I was lucky enough to attend, even though it meant a 130 mile round trip and I had begun to write my blog by this time.

In my blog, I write about my journey, rights, events amongst others to raise awareness and advocate for change.

At this time I also learnt that simple things like an app on my phone, so that my wife could track me and thereby reduce her worry, enabled her to allow me to get out more and feel like I was living not surviving. 3 more research studies followed and I am now a couple of months into a 1 year study.

Since then, along with Twitter and a new Facebook group, I have joined a number of Groups:

South Yorkshire Research Advisory Group
Young Onset Dementia & Alzheimer’s (YODA)
Young Dementia UK Network
Dementia Alliance International
DEEP UK SHINDIG Group
Dementia Diaries

along with a couple of Dementia Cafe’s. Last week I had discussions with Sheffield University and Dementia UK about bringing Admiral Nurses to Sheffield and next week I will be trying out a Dementia Friendly Cinema screening.

6 months into 2018, my lived experience is more positive. I seem to be in a much better place going forward and the path of learning, advocacy and raising awareness have given me the strength to continue fighting mine and for others Dementia for as long as I can.

My blog reader, as well as record of my journey, I hope, will perhaps empower someone going through the same journey as I started about four and a half years ago to put aside the negative stereotypes and look for ways to live their life with Dementia.

 

D Day, the Post War Settlement and the lessons from history still to be learnt.

Operation Overlord was the code name for D-Day, the largest invasion force in history, on 6th June 1944. It brought together diverse cultures, working to a common goal, the culmination of a world war, that confronted an axis of countries whose ideas were based, to a large part, on discrimination and human rights abuses.

It was to be a time, an opportunity, to learn from the the war and confine the old world order to history, building a new, fairer, inclusive world. the reality was to be very different.

The operation was the culmination of two years of planning and there were around 9,000,000 tonnes of supplies and 2,000,000 allied troops stationed in Britain before the invasion.

On D-Day, an armada of up to  5,000 naval vessels departed English ports with up to 160,000 troops aboard. Over 800 aircraft flew up to 30,000 men into occupied territory from midnight on 6th June 1944.

Also in 1944, the then Minister of Health, Henry Willink,  proposed the formation of a National Health Service.

All of this culminated, 11 months later in peace being declared in Europe and the Pacific in 1945, with the hope that lessons would finally be learned and that a vision of a “Fairer Society” would become a reality.

In July 1945 Labour won the General Election in Britain, starting the rebuilding process and in October that year the United Nations was established. The post war settlement was touted as a new dawn for a civilised fairer society, the reality has become somewhat different, with politics by Consensus.

By 1948, following the Beveridge report, the NHS began to much fanfare but this served to paper over the cracks of the “Fairer Society”. The Windrush generation began arriving in Britain, being one of Attlee’s Government of 1945 – 1951, failings, to give them British citizenship, an unfair mistake that still rancour’s today.

During the 50’s and 60’s, slum clearances and road building amongst other schemes, papered over the cracks of social and disability inequality. In 1957, Harold Macmillan said “most of our people have never had it so good”, which you could interpret reader, from the use of the word “most”, that during this time, governments were aware of inequalities and if things were that good during this time, successive governments failed to improve the funding model for the NHS. During the 1960’s things changed.

During the 70’s came financial crisis and strikes, it became apparent that society wasn’t fair and equal leading to the arrival of Thatcherism of the 80’s and 90’s, the riots, miners strike and the introduction of “Care in the Community” a supposed end to the warehousing of the disabled prevalent for hundreds of years, which again papered over the cracks with inadequate funding, support and services.

Then came New Labour, with their theme song “Things can only get better”, the dubious Iraq war and the failure to Control the banks and we also had the PR wonder called the Minimum Wage and Tax Credits.

Instead of controlling the inflated wages of some, prices, increasing company profits in part paid for by increased prices, tax avoidance and introducing a statutory living wage, we had the minimum wage and tax credits trumpeted as a fairer Britain, more papering over the cracks.

Following the General Election of 2010, the new Chancellor of the Exchequer found a note from his predecessor “There is No Money”, in fact New Labour had turned a budget surplus into a deficit of £1.6 trillion pounds which enabled Austerity and the draconian measures that followed.

With Austerity have come the cuts, the rich keep getting richer, recently it was claimed that 99% of the worlds money is owned by 1% of the worlds population, indeed George Soros recently received a pay settlement of £70 million, who needs that much. He is also a Hungarian born, American citizen, meddling in British politics.

Following the General Election in 2015 and the subsequent Referendum leading to “Brexit”, may be reader, leaving the European Union provides an opportunity to build a “Fairer Society” free from Legislation and interference from Brussels. May be politicians should spend less time arguing over a Referendum, which it was made clear by David Cameron in the General Election campaign of 2005, was a one time vote with no second Referendum.

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With the advent of Social Media, we seem to have moved on from papering over the cracks to “rule by division” and the “blame game”, dividing opinion by

blaming one part of society for ills of another,

while playing political football with peoples lives.

Austerity has also led to the out sourcing of benefit assessments undertaken by people unqualified to assess specific conditions, cuts to benefit payments and a lack of funding, services and support for disabilities that a “Fair Society” would surely provide.

There is still no universal access to post diagnosis support for people living with Dementia or other disabilities and their carers, including activities and sufficient signposting to taking part in research.

The abuse of our rights with Dementia and disabilities continues including prescription charges if you are diagnosed under 60 years old and access to transport and the failure to enforce the UN convention on the rights of persons with disabilities, also inclusion, engagement and equality in decision making and services.

The vision of the 1942 Beveridge Report which proposed widespread reform of the system of social welfare to address the five “Giant Evils” in society at that time; squalor, ignorance, want, idleness, and disease, seems to have been lost in a media run era of self interest, where the newsworthy get the lions share of attention.

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It seems to me reader that, far from moving toward to a “Fair Society”, we are moving back past Thatcherism to the sectioning and warehousing of people with Dementia. In  Britain it is reported that currently 70% of care home residents have Dementia, what are the figures for Heart Failure and Cancer, the 2nd and 3rd biggest killers in the UK, 2017?

Lately, the blame game has moved on to the increased cost to society of Disabilities. The post war hope of a “Fairer Society” has faded and you may conclude reader, that we seem to be going back to a society that hasn’t learned from the Great Depression of the 1920’s and the subsequent 1930’s, where blaming parts of society for the ills of others and where disengagement and discrimination became the norm and after 8 years of minority Government, the opposition isn’t blameless.

There is too much talk and not enough action by those that can make a difference.

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Do Politicians always tell the truth at elections anyway reader, how many times have we heard this or that will change, during an election campaign, nationally or locally, for nothing to change anyway.

They could undertake a social revolution, working together to build an inclusive fairer society, without the influence of big business and self interest, with fair wages and prices, services inclusive of disabilities as the norm.

It could also include making voting in elections compulsory as in Australia, as my Father used to say, “If you don’t vote, you cannot complain” and the NHS becoming proactive rather than reactive.

If the NHS and society were more proactive with appropriate integrated support and services, may be I and many others could lead a longer better life within our disabilities and may be other conditions like my COPD and their co-morbidities will take us before we enter the final stage of our Dementia’s or other disabilities, saving us from the indignities and the suffering of our families that that final stage brings.

I can hear them now chocking on their Lunches in both houses of Parliament and the Lobbyist’s rushing to their phones, David Cameron used to harp on about “The Big Conversation”, well maybe it’s time for it to really happen however, my own experiences of starting a conversation have been on the whole negative.

Whilst the World Cup is on Theresa May, Jeremy Corbyn and Vince Cable, stop playing political football with peoples lives, have a big conversation together, end the Austerity caused by the £1.6 trillion deficit, improve NHS funding, improve support and services for people with disabilities and end the Barbaric systems we have in this country.

No more Guidelines and Awareness, it’s time for Policy and Action

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I write these articles in my blog as a record of my journey through Dementia, to comment and hopefully raise some awareness about life with a Dementia. Sadly, the people that have the power to bring change are still unwilling to engage and fail to respect the rights of people with disabilities.

Whilst I write about my experiences in Dementia, which is relevant to my life at this time, it is important to remember that there are many other disabilities and their carers experiencing the same barriers and discrimination as the Dementia community. It is surely time for government and organisations to put aside self interest to build a fairer society, indeed according to Oxfam

The richest 1% now has as much wealth as the rest of the world combined

As I look into the distance, across the long road of Dementia, where my journey is but a few years old, I search for the sunrise through the somewhat gloomy sky, hoping action will bring the sun to our world of Dementia and other misrepresented disabilities and our carers.

 

Final Thoughts on “A Good Life with Dementia” course

The year following my diagnosis was challenging dealing with my diagnosis, the loss of my father and finishing work, apart from Family and my Neurologist, no support. Things changed when I started doing research and connecting with people and organisations on Twitter.

I started seeing posts about a new Post-Diagnosis course in York called “A Good Life with Dementia” through Innovations in Dementia and York Minds and Voices, a DEEP UK group. I read Damian Murphy’s blog about the up coming course, for people living with Dementia and their carers, which made me curious and the next week I read Wendy Mitchell’s blog about week one of the course.

The following week I read Damian’s blog about week 2, my wife Sheila agreed it could be something that would work here in Sheffield. I contacted Damian to see if we could visit for a morning to which he agreed.

Week 3 of the course, turned out to be a turning point for my wife as well as she got a lot out of the morning as well. It was held at Lidgett Methodist Church

Church logo 2

where we all sat round a large table

Round Table

When we got home we talked about it and Sheila agreed that I could go again but this time on my own. Talking to Wendy Mitchell, who suggested using a phone app so that Sheila knew where I am and Sheila felt she could try it and see if she was happy with me going it alone, so I contacted Damian who agreed.

Going to Week 4 of the course was challenging going alone, the noise and busy stations were challenging but the session including perceptions made it worthwhile.

By Week 5 I had some in-ear Headphone which were ok but didn’t cut out all the noise and was an interesting morning based around a Market Place for 6 local organisation..

On Week 6 I had some over ear Headphones which were much better and the session on our rights was very enlightening..

The final session Week 7,  “Graduation Day”, a session reflecting on the course and was a mixture of happy and sad feelings. Happy that I had continued on the course, learnt so much and been able to do the 130 mile round trip on my own, sad that I had met so many wonderful people and I wouldn’t be meeting up with them for sometime.

The course is a valuable peer to peer post-diagnosis resource, for people living with Dementia and their carers, where we all learned from each other and of some of the things we can access. Talking face to face is so much more powerful than a video and someone at the front reading from a script. Websites are ok but its finding them and as one gentleman pointed out, he can’t use a computer anymore.

There weren’t just people at the earliest stages of Dementia, some were further on in their journey BUT they still had a lot to contribute and are going on to join York Minds and Voices along with their carers who were also took part in the course.

Damian Murphy has written a blog about comments by people on the course.

Rachel Fowler, a Student Nurse, was at the course each week helping out and herself learning, saying

“It’s opened up my eyes to a world I had never previously experienced and gave me a whole new understanding that will help me enormously in my nursing career.”

If this course can have that effect on a small group of people living with Dementia and one student Nurse, imagine reader,  if this course was run all over the UK and the world !

As the Alzheimer’s Society week has changed from Dementia Awareness to Dementia Action, it is time that our rights are no longer ignored and post-diagnosis support and Rehabilitation, from the point of our diagnosis of Dementia, should become the norm.

I wonder reader if locally and nationally, post-diagnosis support will become a reality for persons living with Dementia and their families.

This course has shown me that I can live within my limitations, knowing that as time goes on those limitations will become greater.

Whilst in the end stage of Dementia, there may be suffering for the person with Dementia and their family, society and the media should no longer put those of us in the earlier stages of Dementia into the media box of wrinkly hands and the state, regardless of where we are in our journey, should now put us on a par with other Chronic Diseases where they are referred to as fighters not sufferers.

 

Part 4-The RADAR Alzheimer’s research study.

Recently, I was back at the Royal Hallamshire Hospital for the next part of the RADAR Alzheimer’s research study.

They had booked me a taxi and I got there in time for Grace to greet me and we went through to one of the research rooms.

After the usual questions and blood pressure, Grace took some blood for tests for the study to check different levels in my blood and checked any tablets left.

The appointment was three days early because of Bank Holiday Monday so I had 3 tablets left. I explained that I would prefer to have the appointments on a Monday in future so that I can manage my time better. Grace said that wouldn’t be a problem, all I needed to do was go back on Tuesday to check I had taken the last three tablets.

Another simple research appointment and once my Tablets arrived arrived from Pharmacy, I was free to go and I made my way down to the main entrance to wait for my Taxi.

 

Scottish Dementia Awareness Week 2018

Starting tomorrow, 4th June 2018, it is Scottish Dementia Awareness Week 2018.

Alzheimer Scotland has online information about Dementia Awareness Week 2018.

In their blog Let’s Talk About Dementia  you will find out about what the Society is doing online during this week.

The Alzheimer Scotland Centre for Policy and Practice (ASCPP), which is based at University of the West of Scotland (UWS), is running a social media campaign in support of Scotland’s Dementia Awareness Week, which runs from Monday 4th to Sunday 10th June 2018 with the Twitter hashtag #oneweething.

There will be a stand at the atrium at Dumfries and Galloway Hospital along with other events in the area.

Danestone Community centre in Bridge of Don will be holding events all week.

intu Braehead are having ‘Beer with Buddies’

Trellis Scotland want you to pot up a plant or sow a seed for Dementia Awareness Week.

There will be events in the villages of Juniper Green and Baberton, Currie and Balerno all week.

On Monday, there will be Dementia friends sessions at Paisley and St Johnstone also

 

DAWSCarnoustie

 

Alzheimer Scotland is calling on the people of Oban and Lorn to help make sure nobody faces dementia alone with various events.

On Tuesday, a pop up cafe will be held at Alzheimer Scotland’s Dementia Resource Centre on King Street, Aberdeen between 10.30am and noon.

On Thursday the Scottish Fisheries Museum is having a Dementia Action Day and in St Andres the Byre Theatre is holding an event.

On Friday, Ballachulish, Kinlocheven, Gelncoe Obich and Duror will be having a Cuppa and Cake fundraiser at Ballachulish Hall from 12-4:30pm and Ayrshire College Kilwinning will be holding an awareness event.

 

The Alzheimer Scotland Annual Conference is on Friday at the EICC, The Exchange, Edinburgh, which is where they’ll “investigate how to close the gap between policy and practice, design a digital strategy that is inclusive of people with dementia, delve into the future of dementia research and much more.”

Friday is also the closing date for Scotland’s Dementia Awards 2018 please nominate.

Some buildings have gone purple in Glasgow

PurpleGlasgow

Police Scotland will be reminding people living in the Highlands and Islands , worried about people with Dementia losing their way,  to download the Purple Alert App

There will be many more events during the week, engaging locally & nationally and you will find a further list of some of the local events here.

 

 

Rural Dementia Conference 2018, 28th May in Ireland

On Monday, The Rural Dementia Conference 2018 was held at Glenlo Abbey Hotel near Galway, Ireland.

The event was hosted by Dementia Ireland and FORUM Connemara and included people living with Dementia, family members and carers as well as medical professionals, policy makers, PhD students , local businesses and broadcast on You Tube.

Agnes Houston, from Scotland, was the first to speak, and some of the interesting comments I noted during the day, include:

Some services are: “Square pegs in round holes”

Scottish Dementia Champions: “Dementia Champions challenged by time and distance getting between visits”

Anti-Psychotic use: “27% of people living with Dementia in 12 Western countries,  were prescribed Anti-Psychotics on average”

Being a carer: “You are not being selfish in taking care of yourself”

Stigma: “Stigma, a huge problem for many”

Respite at home: “The most beneficial for the person with Dementia, their carer and family”

Human Rights: “We’re not talking about putting sticking plasters on”

Whilst I wasn’t there and only got to see some of the sessions on You Tube, it was clear that things are moving on from awareness to engagement and action in Ireland.

Empowerment from the point of diagnosis, including support, rehabilitation and counselling for the person receiving the diagnosis and their family along with involving them in developing new pathways, services and respecting Human Rights.

Moving away from the one size fits all model to inclusion and choice, enabling not disabling.

“Remember to enable, not do for”

Towards the end of the day, Chris Roberts and his wife Jayne, from Wales, talked about their life with Dementia.

Sadly for Chris and his wife Jayne, their time in Ireland was spoilt by the proprietor of Flaherty’s Pharmacy, Main Street Oughterard, Co. Galway:

ChrisJayneIrelandDiscrimination

as Jayne Goodrick said previously at the Alzheimer’s Society Conference in London

“Everything has changed, and nothing has changed”

21st Century Britain – Society Guardian’s take on Disability Discrimination

In last Thursday mornings Guardian newspaper article The disability system is blocking people like Jaki from their benefits – literally Frances Ryan, tells of peoples experiences in accessing buildings for their re-assessment of Disability Benefits in total disregard for their rights.

From 5 inch steps to intercoms at the entrance that a deaf person cannot use, these people and many others have been deemed fit for work.

EqualAct1

As examples:

Article 9 of the United Nations Convention on the Rights of Persons with Disabilities states

1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia:

(a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces;

(b) Information, communications and other services, including electronic services and emergency services.

2. States Parties shall also take appropriate measures to:

(a) Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public;

(b) Ensure that private entities that offer facilities and services which are open or provided to the public take into account all aspects of accessibility for persons with disabilities;

(c) Provide training for stakeholders on accessibility issues facing persons with disabilities;

(d) Provide in buildings and other facilities open to the public signage in Braille and in easy to read and understand forms;

(e) Provide forms of live assistance and intermediaries, including guides, readers and professional sign language interpreters, to facilitate accessibility to buildings and other facilities open to the public;

(f) Promote other appropriate forms of assistance and support to persons with disabilities to ensure their access to information;

(g) Promote access for persons with disabilities to new information and communications technologies and systems, including the Internet;

(h) Promote the design, development, production and distribution of accessible information and communications technologies and systems at an early stage, so that these technologies and systems become accessible at minimum cost.

Article 28 of the United Nations Convention on the Rights of Persons with Disabilities states

1. States Parties recognise the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realisation of this right without discrimination on the basis of disability.

(c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;

These are just 2 of the Articles that the UK is signed up to and the Department for Work and Pensions has so far failed to comment to The Guardian article.

Equality Act
protect the rights of individuals and advance equality of opportunity for all. to update, simplify and strengthen the previous legislation and. to deliver a simple, modern and accessible framework of discrimination law which protects individuals from unfair treatment and promotes a fair and more equal society. The Equality Act will replace all the previously mentioned Acts.

You may not be able to get access to the place of your assessment, or have assistance of someone to help you with your disability during and assessment, or you may be in hospital unable to communicate or in a Coma, it doesn’t seem to matter, the rules are rigid with total disregard for our rights.

It appears to me reader, that the Department for Work and Pensions is in breach of the UN convention (CRPD) and the UK’s own Equality Act 2010, you may disagree, that is your right.

 

 

 

 

“The Twitter Use of People Living with Dementia” Study

Last Thursday, saw me take part in my 5th Dementia Research Study.

Catherine Talbot, a PhD student from the University of Exeter Medical School, travelled up from Exeter to interview me for “The Twitter Use of People Living with Dementia” Study.

The Study takes a year, there will be 2 further interviews, one in six months and a final interview in twelve months time.

Catherine had already emailed me the consent form and questionnaires and an assessment of functional ability, which I had completed and posted back to her and she asked if she could record the interview.

We started with a Cognitive Assessment and then we talked for about 30 minutes about how and why I came to use Twitter. We then talked about the challenges (Trolls) and the benefits of using Twitter after a diagnosis of Dementia.

Some of the benefits are the support of peers who have been through a diagnosis of Dementia and organisations/charities that provide information and support. It can aslo be easier than talking face to face, especially on the foggy days, as I can type something out, change all the typos, something which is happening more and more, before posting.

The second part, again 30 minutes, was talking about some of my Twitter posts and retweets which Catherine had printed off. That done, it was time for Catherine to go and travel back to Exeter.

This was another example of how simple, taking part in research can be and another example of a simple activity we can benefit from by being engaged and may benefit future generations.

 

First time at my Local Dementia Cafe

Last Tuesday was my first visit to a Dementia Cafe at St Thomas More Catholic Church in Parson Cross.

On arriving I recognised someone from last weeks Alzheimer’s Society Cafe and I went to the counter, bought a Coffee, sausage sandwich and sat down at one of the tables, where I found some more people from last week.

One of the organisers, came for a chat and she explained about the cafe and the different activities they have. I filled out a contact form and a consent form for Data Protection.

Over the next hour we all had a good old chat and there was plenty of laughter.

Then it was time for the second hour, a Mother and Son Duo singing 50’s songs. We all enjoyed it but it was so loud and by the 3rd or 4th son I started getting pains in my Temples and back of my head so I said goodbye and lesft with a somewhat painful and foggy head to make my way home.

I did enjoy it and will certainly go again, some of us will also be meeting up at a DEEP UK meeting next month but I will have to be selective about the activities I stay for in the second hour so some weeks I will only be able to go for the first hour.