Comments about the blog

Since setting up this blog I have found many hundreds of comments about it, many of which are very interesting.



I confess that I started this as a way of having an on line diary not expecting anyone else to read it let alone comment on it.



But its now read in 101 countries by over 14.050 readers, something I find truly amazing, and its used in Universities for teaching students about Lewy Body Dementia.



I had no help with setting this up, but just got on with it not expecting these results.



It is not easy to set up the blog as I had no experience, and to be totally honest I don't think I could do it again now without support, but I think it was well worth doing in the end



Its totally free to use, which is a bonus to me, and I don't use advertising, although I talk about charities etc at times.



I sometimes use news stories which seem interesting to me, as I am sure that others around the world would find them helpful too, as we never learn enough about this illness, or how we can inspire others to help us.



This has lead to me being accused of using the news press to further my blog, but in truth, if I see  a good story in the press, then why not let others read it as it may help them.



I get quite a few e-mails which I try to answer on the good days, but many comments come without and e-mail address so I don't get involved.



I hope this answers any questions sent in over the last few months, if not I will extend this with more answers in the future.

 

Lewy body dementia and eyesight

A few months ago, or so its seems I wrote about having problems with my eyesight, and how people think it is all connected to the Lewy Body Dementia.



Having been put through a lot of tests over the last few months, I was beginning to wonder what was happening as I have periods of Double vision, which can be annoying when trying to watch television or read.


After being through tests done by Dendron the Dementia and Neurological Research  Unit, I was sent for more tests after they decided that more needed doing, as they thought it was interesting.



Then the Eye consultant told me to blank one eye out with a handkerchief, behind my glasses. This is fine but it means everyone looks at you, perhaps thinking that my wife has given me a black eye, I say that in jest, as I gave her one during a very bad night  when I was having one of my nightmares, caused again by this weird illness.



But I opted to walk around or watch television with one eye shut, and I am getting used to doing it now when I see two of something.



However that can cause upset when someone like the Grandchildren or my daughter come and give me a kiss , as I shut one eye as soon as someone gets within three feet of my face, otherwise I see tow of them. The sad think is that children don't understand what you are doing.



This has now restricted my life as I don't now drive as much as I did, and have had to get used to using my left eye for photography.



I am having to return to the Eye hospital again this week to have some more tests done, in the hope that they will say, that its just this illness and there is nothing more they can do. I then have a second appointment two weeks later to get the answers.



I have seen some articles this week which confirm double vision etc, in Lewy Body Dementia so perhaps its another change in life, and one that may get worse in time, along with balance problems which seem to have started.



Life is fun when you are healthy and you never appreciate your health until the bits fall off or stop working.



Perhaps one day they may be able to do and perfect a brain transplant, and then like computers we can have a new memory fitted.

Strange things which happen

The other day I went for a walk to the supermarket with my wife, daughter and Grandchildren and as I was tired when we arrived, and the children had gone on their bikes and scooters, I decided to sit out side in the sun and wait for them to come out again.



While I was there I remember looking at a large bicycle which was in a stand directly in front of me, about 12 feet away from where I was sat, so obvious that I could not miss it.



I was looking at this and watching the shop door for around 5 minuets, but was shocked when I looked at the bicycle again to find that it had gone? But where, I know it had been there and never saw anyone move to remove it.



Was this my mind? I simply don't know, but I am convinced it was there as I had seen it two days prior to this



I was totally shocked by this and started to doubt myself, even tough I am convinced in my own mind that it was there in the first place. is this my Lewy Body Dementia playing up again

Dementia and places if worship

I have heard many comments about priests and dementia some of which makes me very angry





One was once heard to say that its a waste of time doing services in care homes etc, as those with the illness don't know the tunes or the words, and just sit there looking into the garden.





I did wonder whether he was boring those poor people to death, but I was left a little shocked and annoyed when I heard these words, as I could not believe my ears.





What sort of clergyman goes to a care home etc to take a service and comes out with pathetic comments like this.





Do they really not understand that many people with memory problems got into religion at an early age in life, and therefore, these things are built into their memories.





To us its a ritual and a major part of our life, and not one we want changing just for the sake of doing it.



They like the old hymns and forms of service without long winded sermons, yet these people cannot get this into their heads that we like our services to be short and don't want to listen to the gospel according to this or that political party as many seem to do these days.





As a person who once wrote to a bishop about Dementia, I was left staggered by his lack of understanding and care, let alone the fact that it totally ignored what I had said.





Perhaps sooner rather than later these people will be trained to  take on board , what is happening in society and do something about it.





Lets be very honest many churches are kept going by older people who attend on a regular basis and ask for nothing but respect, something I fear many clergy don't understand these days.

Move to give recognition to dementia-friendly churches

After reading this in the news today, I realised that some churches are doing something positive, and after all the time I have tried to get things changed, I now realise that I am not alone. Since my diagnosis I have struggled to come to terms with church services which change every week, and sometimes use umpteen variations of the Lords Prayer, and that leaves me feeling totally left out.

When I was first diagnosed with Lewy Body Dementia in Oxford, I could not remember the Lords Prayer and that was distressing, as it was something I grew up with.

Then  many months later after having to move home from Oxford back to the North East and had been given the dementia medication, I managed to pick it up again, only to get a shock when we moved back to my old Church in the North East where they seem to use different forms of this at every service. Things got so bad that I have now stopped going, because the clergy only think of the youngsters and not the older people who are regular attenders and work and pay to keep churches going.

 

I even wrote to a Bishop and was staggered by his response and total lack of thought. Judging by his answer I guess he knew very little about Dementia and did not seem to care. It was a case of get up and go to earlier services even though I have extremely rough nights with very graphic nightmares, and usually feel pretty drained in the morning.

So good luck to this group and I will try to keep in touch.

7:00am Saturday 24th August 2013 in News By Fran Bardsley, covering Education, East Oxford and Cowley. Call me on 01865 425439

                                       

 

The Rev Joanna Collicutt at St Mary’s Church in Witney, which has a room where older people meet. Picture: OX61231 Mark Hemsworth

OXFORDSHIRE churches which make themselves welcoming to dementia sufferers could be recognised in a new award scheme.



Just as churches which offer events, services and support for young people and children can be accredited as youth and child-friendly or family-friendly churches, the idea is that Anglican churches in the Diocese of Oxford meeting certain criteria could receive dementia-friendly church awards.

The idea is the brainchild of the Rev Dr Joanna Collicutt, who is the Spiritual Concern for Older People adviser for the diocese.

It is in part inspired by Prime Minister David Cameron's dementia-friendly communities initiative launched a couple of years ago.



Dr Collicutt said: “I had been speaking to some people on the ground who are doing really interesting things in this area.



“As we already give awards to family and youth friendly churches, I thought we could do something in the spirit of that.”



The Rev Pat Buttha, assistant curate at St Michael’s Church in Cumnor, has been running a memories cafe at the church for the past year – offering elderly people a chance to reminisce.


Some of the people taking part are understood to have memory issues.

Ms Buttha has been involved in early discussions about the scheme.

She said: “We have lots of work in society with young people but people are less comfortable about dealing with dementia and the realities of people getting older. I think it’s very important.”



While the details of the award scheme are still being developed, criteria could include everything from the physical environment to training of staff and congregation members.



For example, the church would need to have good access and signposting, accessible toilets and help with transport needs.



Service times would need to be convenient and service sheets user-friendly, with familiar words and music, accompanied by community activities, such as signing or coffee mornings.



Churches would also be expected to have links with local care homes, involvement with local community initiatives on dementia, and some staff would need to have completed training in dementia awareness and adult safeguarding.



Movements are being made to look at the issue nationally, but this scheme would be unique to the county.



Dr Collicutt said: “Most people with dementia don’t tend to go to the main Sunday services but might prefer a midweek meeting, which is much quieter and tends to have an old-fashioned service, which is perhaps easier to remember.



“Often a person with dementia is cared for by a spouse, so it’s also about looking at how the church can support carers.”



She said while the majority of older people did not suffer from dementia, there was a strong feeling that churches should be made welcoming to those who did.



She said she hoped the scheme could be up and running within the next year, and churches could then apply for accreditation.

                 

Much better today

I am feeling much better today, even though the builders are making a noise next door, and have been since 8am this morning.



I went to bed feeling shattered at 10pm and then woke up at 1-04am, after which I was just knapping, while listening to relaxing music, so I suppose I did get some rest.



Not sure what today will bring as my wife thinks we should go out to get away from the noise as much as possible, so its a case of wait and see.



Lets hope its a better day all round.

Not a good day

This morning was terrible, and I was struggling with the noise at home, then next doors builders started, and I just gave up altogether.



When my hearing is acute as it was today, life is unbearable and there is nothing anyone can do.
It feels like I have a huge hangover even though I know that I have not had a single drop of alcohol.



We had to go out and just walk for a while, and after lunch I had a short sleep which helped slightly.


I know that part of my problems is caused by the lack of sleep at night so its a vicious circle really.

But this afternoon my wife had a bag of crisps, so I left the room and sat upstairs, as that sound on a bad day is unbearable.



Lets hope to night will be better, and I manage to get some sleep without a break for a change.



We are supposed to be going to my daughters inn Farnborough this weekend, but if this carries on I am not going to be very good company

Nice Day Out

Today my wife had to go out to Raby to deliver some Mothers Union parcels, and as there was a vintage vehicle show on near by on the Raby Castle grounds we decided to stay and look around.



It was really marvellous seeing all of the old vehicles many of which I remembered from my childhood and some form my teenage and early twenties.



It really made my day.



There were also a lot of trade stands which sold engine parts etc. something that used to keep me occupied once up on a time, now these pates mean nothing at all to me, as I no longer understand engines at all.


 But once many years ago engines could be stripped and rebuilt by anyone, without the need to go to a garage. Now you need a computer. Since this horrible illness got me machines like this don't make a lot of sense anymore and that is distressing, as my car was my pride and joy, something to be worked on each weekend.



Now its me that is worked on by others

Austin 7

 

 

                                                        Bedford Truck

       Traction Engine something which makes my hairs stand on end as the always seem to be alive

                                            Ford Thames 4D truck along side another ford truck

                                                 

                                              Old Brake down lorry among other vehicles

                                   
                             My Cousins Renault 2 CV which is his pride and joy after his wife and family

                                                       A child's replica of dads car

 

 

Are Dementia figures dropping?

I have seen reports saying that the numbers of people being diagnosed with dementia are dropping and I am starting to wonder whether the figures are accurate, or if this is to take the pressure off the dementia charities etc.





I simply don't understand these figures and wondered if it was just government spin doctors at work again.





However one thing that does alarm me is the fact the National Health Service is in a total mess and running out of money due to overuse.





Is this due to things like the rise in teenage drinking, where many need hospital treatment.



There has always been a problem with teenage drinking but now its getting out of hand, and this alone can bring the health service down if we are not careful.





Years ago if you got drunk, you were put in a police cell overnight, and either given a warning  or were charged with being a public nuisance, now they send them to hospital in an ambulance, which must cost the state quite a lot of money each weekend.





Not only that but I do wonder whether this will increase the number with drink related dementia problems later on in life.





Years ago you would have been embarrassed if you were drunk, but now its a badge of merit especially among the young and students, and many think it is funny when it happens.



But if the government got hard on them and made them pay for the ambulance and the treatment, wouldn't it help, both now and in the future.





Some years ago my dear wife was involved in a serious road accident through no fault of her own, and I remember opening the post two days later to find a bill for £25 for the ambulance for taking her to hospital. That to me was quite a shock know full well that she could die before the bill was paid.
Luckily for the family she survived and keeps me going now.





While that accident was serious and I later understood that it cost quite a lot of money to use an ambulance, I now read the papers feeling very angry that people can get drunk and get first class treatment etc, when it is all self inflicted.





Dementia patients on the other hand are not always treated with care and respect in hospitals, so just what is going on. Dementia as we know is not self inflicted, although I understand that one type is alcohol related





Its not too long ago that the press were saying that the numbers of people being diagnosed were going to double, now they are implying that the illness is fading when many of us know full well that it is totally wrong.

National Dementia Action Alliance

As someone who has Lewy Body Dementia, I was a little sceptical at first about the National Dementia Action Alliance, as I could not see what good it could do, but now I can see a dramatic change in the way society in general looks at this illness.

I can say now that I am honoured to be part of this group which is making a real difference
 

A lot of charities and national bodies have joined up to make a real difference to the way dementia is portrayed, as now things are starting to look much healthier than many expected.

Many like myself thought that this would end up as a glorified talking shop, with people being involved, just for the sake of it, but my fears have been allayed and we have been proved wrong.

I think the main reason for this is that many people still feel that dementia is still classed as an old age illness, as is therefore not worth bothering with.

But in actual fact there are over 16-000 younger people in the UK alone, with this illness and this number is growing fast. The ages of these people can be as low as 30 years old and in a few cases much younger, so dementia is certainly not age related, but can strike at any age.

Like many people I get very annoyed when I hear the press talking about the illness, but then they go on to show pictures of elderly people, rather than showing pictures of people who are different ages.  

Some of the worst offenders are the public services who are supposed to raise awareness of dementia.

However through the Dementia Action Alliance we are now seeing large companies and Government bodies,  coming on board to see what problems need addressing, and how they can help those with the illness have a more dignified time, rather than being told that nothing can be done to help.

The Alzheimer’s Society was given responsibility for steering this group, alongside other major dementia charities.

I was honoured to be asked to speak at the Launch of the Government's Cross Party Committee on Dementia at the House of Commons, as I am delighted at the way this group has got its teeth into Dementia, and are genuinely trying to get things changed in all sections of the illness. Things have moved on since then and I look back with great pride, as it was an achievement. Now we look to the DAA to take this further

The facts are as follows:-

The Dementia Action Alliance is formed by well over 480 organisations getting together to try to deliver the UK National Dementia Declaration; aimed at a common set of values set up by people with dementia and their carers, assisted by charities like the Alzheimer’s Society.

The idea is to set out a vision of how people with dementia and their families can be supported and encouraged to live well with the illness   

http://www.dementiaaction.org.uk/

Alliance members work towards delivering this vision through committing to actions within their organisation and undertaking joint programs of work. Members are from charities, Health Trusts, Local Authorities, Royal Colleges and, local businesses.

The DAA is to achieve the UK National Declaration - but it would be great if other DAAs could be formed in other countries and we all link together - that would be amazing!

There are meetings at regular intervals both at Alzheimer’s Society Central office where the next meetings program is sorted out followed by a quarterly meeting where everyone gets together to hear about new issues and progress reports 

These meetings are attended by professionals along with those charities and businesses involved and lastly but certainly not lastly people with dementia and carers, where everyone can air their views about this subjects being discussed.

Through this I think in the future we will see dementia in a different light, and hopefully this will dismiss the stigma and other fears about the illness. I know that I am not the only one hoping for a better life for those who are affected by this illness and those who care for them

As I see it the more UK companies and charities we get involved in this project the better it will be, as long as the are genuine, I say this because I have heard of some who claim to be dementia friendly but their premises are anything but dementia friendly but I live in hope that this will change in the future  

 I also think that by encouraging companies and business to get involved we are raising awareness of dementia, and in the end we will make every town, city and business dementia friendly.
After this we are well on the way to putting dementia at the front of every agenda instead of it being hidden.  

So please come on in and join us and help us make the country and world a better place for all who have this illness

Neglect a patient and go to prison: Dramatic warning to NHS staff in major review

 

NHS staff and organisation’s that ‘wilfully’ or ‘recklessly’ harm patients should face new criminal penalties, a major review said yesterday.

It also demanded legal sanctions against leaders in the NHS with a ‘couldn't care less’ attitude or who deliberately withhold information.

The review headed by Professor Don Berwick, a world expert in patient safety, said there have been repeated safety defects in the NHS with too many patients and carers suffering as a result.

It called for a culture of transparency that puts patient safety above targets, especially financial goals.

Continually improving patient safety should ‘permeate every action and level in the NHS’, said the review commissioned by the Government in the wake of the public inquiry into the Mid Staffordshire scandal where hundreds of patients were routinely neglected and died. Managers chasing financial targets were partly blamed.

The Berwick report set out measures including a review of staffing ratios to ensure that sufficient numbers are on duty at all times, and simplifying an over-complex regulatory system run by many different agencies.

 The National Institute for Health and Care Excellence (Nice) should come up with a formula to help NHS leaders check that hospital wards are properly staffed, with research suggesting one registered nurse per eight patients, but locally implemented.

However, Prof Berwick said changing the culture of the NHS would ‘trump’ any new rules and strategies, and he stressed that accidental errors by staff would not be subject to criminal prosecution under the new system.

But organisations that mislead regulators or hide evidence would face criminal sanctions along with staff who wilfully mistreat or neglect patients causing serious harm or death. He said: ‘Where there is wilful or reckless neglect of patients there needs to be consequences.’ But it would affect ‘a very small number of cases’.

Prof Berwick stopped short of saying a duty of candour should be enshrined in law requiring NHS staff to report beliefs about serious incidents, saying it was already included in professional codes of conduct.

He also said it would be a ‘bureaucratic nightmare’ for staff to be obliged to follow an automatic duty of candour where patients are told about every error or near miss.

Prof Berwick, a former adviser to President Barack Obama, said most staff were trying to do their best.

But his report said supervisory regimes and regulation in the NHS should avoid ‘diffusion of responsibility’, adding: ‘When so many are in charge, no one is.’ There should be a review of such organisations including the much-criticised Care Quality Commission by 2017.

Campaigners warned the review was another in a long line of ‘navel gazing’ reports into NHS shortcomings with few practical answers.

But Health Secretary Jeremy Hunt said it was a ‘call to action’ for the NHS although he did not accept that a national staffing minimum was necessary.

He said there was a danger that hospitals would settle for achieving the minimum even though there would be times when they would need to go beyond it. Katherine Murphy, chief executive of the Patients Association, said the report was ‘heavy on platitudes but light on practical solutions’.

Roger Goss, of the group Patient Concern, added: ‘Unless the Government implements mandatory minimum nursing staff levels per ward and a duty for all staff to tell patients when their care goes wrong, staff will carry on as usual.’

Shadow health secretary Andy Burnham said: ‘All the experts are now telling the Government to get a grip on staffing levels. Over 800 nursing jobs were lost last month alone – now totalling almost 5,000 since the election.’

Niall Dickson, chief executive of the General Medical Council, said: ‘This important report puts safety first and, if implemented, will improve care and save lives.’

After reading I found myself agreeing with the article, because although we have a brilliant health service, it is let down by some who are either not trained properly or don’t really care about the patients care and should never have been employed.

However I do feel that the chief executives should also be warned and if needed charged as they whether they like it or not are responsible for all of the staff at their facility, and they should ensure that these staff are doing their jobs properly. As an Engineer I was responsible for all who worked under me, and also had a role in ensuring they did their jobs properly and that should also happen in the hospitals etc.

A duty of care is part of nursing and also a major part of the doctors role, and neither should ever be allowed to forget it.

Yes some patients can cause stress and extra problems.  but life would be dull if every patient was the same as the next.

Dementia patients can also be hard to work with as they need more care and attention, but the staff should be trained to cope with all patients these days.

This could also have a knock on effect where people decide that if there is a risk of being prosecuted at work they may not want to go into the job, but as in all jobs these days like my own there was also the risk of prosecution  so its nothing new, it just keeps your mind focused.

 

Holiday on the Northumberland coast

 

 

We have just returned from a wonderful and relaxing holiday at my Brothers Caravan which is sited on a private site on the Northumbrian Coast just North of Bamburgh Castle.

 

I found this to be the most relaxing holiday I have had for some time, just sitting watching the sea, and the wildlife. Watching the sky and the Sea changing colours as the hours went by.

I could not believe just how relaxing it could be just watching and listening to the sea.

While we were there we went out to the Farne Islands by boat and had a wonderful time looking at the large colonies of birds and seals 

 

 

Birds on the Farne Islands

 

Chick waiting to be fed

 

 

 

 

Mother waiting to feed her Chick

 

 

Birds on Outer Farne

 

Sunset from the caravan

 

 

 

Bamburgh Castle just round the head land. This famous castle has been used in many large screen historical films.

 

 

 

Mystical Island of Lindisfarne and Lindisfarne Castle., which can only be visited at low tide when the causeway is visible. 

•                            
•                                      Mothers and babies  feeding on Outer Farne