Tag Archives: Chris Roberts

A blog for our UK members

Over the last few weeks and months, I have been watching with interest various matters in the UK, things happening to people with dementia there, that are a lot more than unhelpful. Wendy Mitchell has written a number of excellent blogs on her experiences of being denied Personal Independence Payments (PIP), and I know Chris Roberts and have no doubt many others have also recently had significant issues around similar things. It seems they want us to live as well and as independently as humanly possible, but then when we do, we are not believed we have dementia, and for many, funding is cut, the very thing that is needed to maintain this independence.

Thanks to the Internet and social media, I often connect with professionals who may be able to offer support, and have connected with Rosalind Hughes via Twitter. Obviously, DAI does not endorse people or organisations, but if we feel sharing the services of a particular individual or organisation to our members might be of value, we do so. This blog is one of those times.

Rosalind Hughes is a solicitor and Head of Just Caring Legal. She has worked in the legal profession since 1995 and has become particularly interested in adult social care over the years due to her work at the Citizen’s Advice Bureau.

Having met families who were wrongly paying for substantial care home bills, who are experiencing significant healthcare issues such as Alzheimer’s, or other forms of dementia, cancer and Parkinson’s to name but a few, she felt driven to set up her own specialist firm dedicated to challenging these cases. Rosalind has a great deal of empathy with families who have been wrongly denied access to NHS Continuing Healthcare and seeks refunds of care fees and offers other vital services to complement her work to provide a holistic service. We do not know her fees, but her guest blog below may be able to support some members who run into issues such as the ones Wendy Mitchell is facing.

Possible ways of funding care needs when a family member has Dementia

By Rosalind Hughes, Solicitor and Head of Just Caring Legal

“Recognising that the care needs of a family member with dementia are more than family and friends alone can manage can be hard. Finding and affording a way of meeting those needs so they can continue to live as full a life as possible can be just as tough.

Many people don’t realise that there is full NHS funding available for care and nursing home fees where an adult needs ongoing support outside hospital as a result of disability, accident or illness. This funding, called NHS Continuing Healthcare is not financially means-tested and is managed and distributed locally by NHS Clinical Commissioning Groups (CCGs).

However, access to NHS Continuing Healthcare funding can be a particular struggle for people suffering from dementia. Some are lucky enough to be found eligible, while others with similar levels of need have to fund their own care or rely on local authority funding, which is means-tested and increasingly relies on having to be “topped up” and paid for by by third-parties, sometimes to the tune of hundreds of pounds a week.

Why this lottery? It is mainly because the criteria for assessing NHS Continuing Healthcare eligibility, which hinges on the person having care needs arising from a “primary health need”, leaves too much room for interpretation. While the National Framework for NHS Continuing Healthcare and NHS funded nursing care has been in place since 2007 to give guidance to CCGs, in reality there is very little consistency in decision-making. Also, the complexity means many people struggle to understand (and are often not fully informed) whether their loved ones are entitled to NHS Continuing Healthcare.

A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and Age UK among its members) concluded that the NHS Continuing Healthcare system is failing people across the country. Entitled Continuing to Care?, the report describes how many people are being unfairly denied this desperately needed support. And how even those who are granted NHS Continuing Healthcare funding are often given inadequate care packages that don’t meet their needs.

The National Framework makes clear that eligibility for NHS CHC is not dependent on a particular disease, diagnosis or condition. It is based purely on establishing a ‘primary health need’ and a full assessment of the nature, complexity, intensity and unpredictability of someone’s overall care needs.

Yet the Continuing Healthcare Alliance found that people with Dementia are regularly incorrectly denied NHS Continuing Healthcare on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS Continuing Healthcare. This can be incredibly distressing and frustrating for families and loved ones who believe that their loved ones actually do meet the eligibility criteria.

The National Framework also makes it clear that just because needs are being ‘well-managed,’ this does not mean they are no longer a factor and should not be marginalised. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS Continuing Healthcare withdrawn because their condition has “improved or stabilised”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.

The report concludes that many decisions on NHS Continuing Healthcare are budget-led rather than needs-based and person-centred as stipulated by the National Framework. There can be conflicts of interest within CCGs, where the person in charge of assessments is also the one charged with hitting savings targets on NHS Continuing Healthcare.

This can make applying for NHS CHC a highly distressing and frustrating experience. On the other hand, it also means in many cases, decisions can be challenged on the basis that the National Framework has not been properly followed. The Times Newspaper recently ran the story of how Vicki Keiller, a 90-year-old woman with dementia, paid nearly £100,000 in care fees when she should have been receiving NHS Continuing Healthcare. She got her money back – but only after a two-year struggle between her determined son Don, a university lecturer, and the local CCG. Success stories are possible with a bit of perseverance and first-class knowledge of the National guidance and benchmark cases such as Coughlan.

So, what advice do we have for people who believe that a loved one with Dementia should be receiving NHS Continuing Healthcare? In a nutshell, it is this.

Don’t believe everything you are told 

You may hear that your loved one “won’t be eligible” for NHS CHC because they are not “at death’s door” or “don’t have to be PEG-fed” – or that someone at the CCG has already carried out an assessment and they don’t qualify. But there are rules about the assessment process which the NHS has to follow, and these include carrying out an initial checklist to decide if an NHS CHC assessment is appropriate, when asked to by the family. If they do not comply you can challenge this.

Keep meticulous dated records of care needs 

When challenging an NHS CHC decision, evidence of care needs is crucial and the family have a unique perspective. Care home or hospital/medical records sometimes omit vital relevant information so check them regularly to make sure they are accurate, complete and up to date. Keep your own detailed journal charting your loved one’s condition and needs, especially (not solely) in the 12 vital NHS CHC “domains” – a copy of these can be downloaded here. Cross reference this with the care records to ensure they present a true and accurate picture. If they don’t, challenge and question those in charge of the care.

Be persistent

Unfortunately, it is regularly reported that CCGs may be making decisions on NHS CHC eligibility based on budgets rather than purely on care needs. It is often only those, like Don, who refuse to give up, that succeed. If local disputes resolution fails you can take the case to an Independent Review Panel, and if this fails, to the Parliamentary Health Service Ombudsman. At Just Caring Legal, I am regularly guiding clients through this complex process and I feel passionate about making a difference and seeking to secure positive outcomes for vulnerable elderly clients.”

Thank you Rosalind.

 

Featuring DAI member, Chris Roberts for #DAM2015 Day 9

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

For Dementia Awareness Month Day 9, we are featuring one of our members, Chris Roberts and his work and blog, which says he is a ‘Dementia survivor so far’. Chris comes from Wales, and is married to the lovely Jayne Goodrich, and has a lovely family as well, one daughter who some of us have met. They are all intensely proud of his advocacy work, and his attitude to living with a dementia, which is a chronic, progressive terminal disease.

Chris has a healthy CV, since being diagnosed with dementia, and is a member of DEEP (UK), a MSNAP Peer Reviewer, a Dementia Friends Champion (UK), an Alzheimer’s Society UK Ambassador, is a Dementia Research Champion, an Alzheimer’s Society UK Advisory Group member, a Member of Dementia Action Alliance, a founder of the FB group; Dementia Information, does extensive media work as a Media Volunteer for Alzheimer’s Research UK, is aBoard Member of Dementia Alliance International, and most recently was appointed to the NICE Committee Member, representing people with dementia. I cannot tell you all of the meanings of the abbreviations used for most of those groups, but can add them at another time if requested!

Please, head over to his blog and read some of his insightful posts about living with dementia, and of the work he is doing. Congratulations Chris, for showing the way to so many others as well. We are all proud of you as well.

Editor: Kate Swaffer
Copyright: Dementia Alliance International

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer’s, but with emphasis that I may “have it” but it certainly doesn’t have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word… “dementia” but most don’t understand what it means! 

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means. 

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Introducing Board member Helga Rohra

Vorstand  HR 1 (2)Helga Rohra, our friend and a Dementia Alliance International Board member from Munich Germany was diagnosed with LBD about 8 years ago. She has given us the honour of sharing her story here.

After one year of struggle and hiding because of the stigma connected to dementia there was a big turn in her life.

Meeting strong advocates in dementia at an International Conference of ADI in London 2012 she got a strong belief. She started to stand up and speak up for all of her fellows touched by dementia in Germany. She now remains busy  lecturing about what it feels living with dementia, focusing on the still existing abilities.

Her demand was inclusion from the very beginning after getting diagnosed, and her book (in German and Romanian language) entitled:”Stepping out of the shadow” highlights these demands. Ever since she is also a speaker at Conferences of ADI and AE.

With the foundation of the European Dementia Working Group of people with dementia in 2012 a milestone in dementia history was set as the second Dementia Advisory Group was formed. She is the first Chair of this group. Her home country Germany awarded her in Dec.2014 the Commitment Award on national and international level.

An incentive for Helga for new projects together with dementia friends all over the world.

As dementia, we know no borders and TOGETHER we are strong!

The picture above shows Helga together with great advocates and two other Board Members, Chris Roberts and Agnes Houston at AE Conference in Glasgow/2014.

Thank you Helga for sharing your story.

Editor: Kate Swaffer