Always interesting, often different

Logos.jpgSome more useful ideas

6 Use or Loose

Use your previous skills to enhance what you can still do. I gave one example in the previous blog post about being organised and thinking ahead. Those were two skills I leant and enhanced throughout a career managing nursing homes and charities. I gained computer skills over 30 years ago and am still learning. I’ve taught others to use social media, basic spreadsheet knowledge and how to manage databases, all from my bed. 

My carers keep everything tidy and my bedroom has all my computer kit and books to hand. People are taken aback at first, but soon understand when I explain that lying in bed reduces my pain levels and enables me to do more.

7 It’s your pain

Only you know what you can and can’t do without being in pain. It’s your pain – no one else knows how bad it is. Pain is telling you something, it’s telling your body to stop. Listen to your body, learn what triggers your pain or muscle spasms. When your body says stop, take notice. 

Please, don’t be bullied by professionals who tell you differently or that you are not trying hard enough. It’s your body – not theirs. I know there is a theory of breaking though a pain barrier – but you are not an elite athlete!  Treat yourself and your body carefully. 

8 Learn who to ignore

Find a way of dealing with the idiots who will ask you stupid questions. For me this is difficult, I have a low idiot tolerance level. I’m also very good at thinking up an answer 5 minutes after I’ve turned away from the idiot in question. I’ve had senior doctors ask why I’m using a wheelchair, judt because they didn’t look at my notes properly. 

I have several different medical conditions which mean I need to use my chair all of the time. When I’m asked what’s wrong with me by a non-medical person, I usually quote the two main reasons, then say, ‘But there’s several others too…….’ the look on the other person’s face usually means I’m kind to them and say nothing more. However I have friends who will respond to that question with ‘………and why have you got such bad dress sense?’ It works for them, I’m not so brave. 

9 Ask for help

One thing that disabled people know lots about is disability. Whether it’s dealing with pain, how understanding how your local Social Services work or getting a good wheelchair. Through years of experience and learning the hard way – we have lots of knowledge and most of us are really happy to share it. It’s the same when choosing a GP or knowing which care agency actually cares. Don’t be afraid to ask. If we know we will tell you and if we don’t know the answer, we’ll probably know someone who will. 

Know the websites to use, Benefits and Work, for everything you need to know about DLA, ESA, PIP and more. Turn to Us, Benefits eligibility checker and great advice on where to get more help. Radar, the best site for finding out your rights.

10 Be an expert

Understand your condition and the effects it has on your body. Understand your medications too and learn about interactions. For some people being part a local group with a national organisation is brilliant. My friend Val who has MS really benefits from going to her local group and being part of the MS Society. You may just want to get a regular newsletter or magazine and know there is a helpline if you need it.

Know your legal rights – if you live in the U.K. – the Equality Act 2010 is the main legislation to understand. If you are in the US it’s the Americans with Disabilities Act 1990. 

If you are able, campaign in some way to change thinking and attitudes. I do and through that I’ve met a great bunch of people and we support each other too.

‘Twas on a Monday Morning……………..

This wonderful Flanders and Swann song seems to sum up everything that happened with actually getting my bathroom works completed!

I agreed with the contractor to have a Monday morning start as the work should only take three days. The bathroom was cleared of storage units, cleaning stuff and the cats litter tray.  I had woken early and although I wasn’t yet dressed, I was respectable enough for the contractors to arrive between 8 & 8.30am. By 9am I was feeling rather cross and phoned their office. I was told that I should have had a phone call on Friday. The Friday call should have explained that there had been a delay on a previous job and the workmen would not get to me till Tuesday. I was not happy. Later that day I was told the men would arrive ‘first thing’ on Wednesday. This was not looking good.

First thing on Wednesday morphed into lunch time. Eventually 2 men finally put in an  appearance. One spoke some English, the other very little. They began by laying a protective cover down over the walk-way into the bathroom. This was great for preventing dirt being traipsed everywhere. The cats however, were not impressed. Their paws stuck to the plastic. They spent the next few days walking around the edges. 

Soon the bathroom floor was ripped up and the preparation work began. Thursday morning started with the new radiator being installed. The cupboards were fixed to the wall. Finally my shower seat was moved and attached at the correct height. For some reason this last task turned out to be quite difficult. The adjustable legs were different lengths and one had to have a couple of inches sawn off. Eventually the seat was low enough for me to sit safely on it. 

The next job was sealing the holes between the floor and the skirting board. Then a special concrete-type underlay could put down. This stuff stank! The smell was very like that disgusting smell you get in male urinals when they have not been cleaned properly. Fresh air spray failed to get rid of the pungent aroma!

I landed up burning a heavily scented candle for several days. 

Whilst the underlay was being smoothed into place the loo had to be removed. Even after the loo was re-fixed we couldn’t use the bathroom until the floor had finished drying. Inconvenient to say the least!

The final task was the measuring of the floor area so that the flooring could be laid on Friday. When the sub-contractor arrived to fix the flooring in place, he told me that the previous days measurements were incorrect. What! How? He didn’t know – not his job!  The flooring he’d brought with him was not just not big enough to fit my bathroom. I was furious. Demanding, through clenched teeth, as to why he couldn’t just get some more that was the correct size? The answer to that was that the supplier was too far away for him to collect it. He was also booked into another job that afternoon. Also he didn’t work on weekends! I told him I expected him back first thing on Monday morning, to which he muttered something about a another booking. 

I tried to calm down before I phoned the main contractors. They did not understand why the subcontractor had left my flat. Thirty minutes later a very apologetic boss was on the phone to me. He was grovelling. He knew his firm had got things badly wrong. He told me there would be no charge for the radiator, which would save me some money. But also informed me that the fitter would not be back until Wednesday morning. I was glad about saving the money, but very annoyed I wouldn’t be having a shower until the following week.

I cannot easily have a stand-up wash, so had to resort to using baby wipes and dry shampoo to feel half decent. I chose not to go out anywhere either as I felt so self-conscious about not being able to have a shower.

I couldn’t wait for Wednesday to come! I was so relieved when the fitter arrived with the correct amount of flooring. Thankfully, the disgusting aroma had almost disappeared. The flooring was laid quickly and well. All I had to do now was wait 24 hours for the sealant to fully dry. 

When Thursday morning came, it was wonderful to be able to have a shower after 8 days without one! Having the warm water cascading over my body was bliss. Having clean hair was such a relief too. I was even able to shower alone, just needing help to get from the shower to my wheelchair. 

The other joy of getting the bathroom done was being able go get rid of the shower curtains I hated so much. I now have beautiful leafy curtains which tone well with the darker flecked flooring, deliberately chosen to reduce the visibility of marks or hair dye. Now that the flooring is correctly laid the shower water drains away quickly, longer leaving the floor like an ice rink. 

I’m so happy and relieved to have a beautiful almost new bathroom, which finally looks good and is safe to use.

 

 

 

An ethical dilemma.

Last month I watched my Royal College of Nursing colleagues give Jeremy Corbyn a standing ovation at the end of his speech to RCN Congress. I felt proud of the support they gave him.

But 24 hours earlier the RCN made a worrying announcement. They have been balloting nurses about the current pay crisis. 91% of nurses said they’d take industrial action short of a strike. 78% of members who completed the poll said they were prepared to go on strike. This is the first time in 101 years of the RCN that nurses have decided to strike.

I have been a qualified nurse for 40 years. Never in my career have I known nurses wanting to strike. We’ve previously protested about pay. As a student nurse in the 1970s, I and many of my off-duty colleagues marched through the streets of Exeter. I will never forget the reaction of some of the by-standers. Whilst the majority were supportive, some spat at us and accused us of killing patients by being on the march. Nurses were only allowed to march if off duty or given formal permission by a Matron. No patient care was affected by our actions. It took some time for my student nurse pay of £11 a week to improve!

RCN members have now voted at Congress to begin a summer of planned protests. And so they should. There is currently a 1% cap on public sector pay rises. Unless there is a change of government, this will continue until at least 2019-20. The effect being that the average nurse has suffered a real-terms pay cut of 14% since 2010. This is not acceptable. Nurses are now being forced to use food banks.

Our professional registration and indemnity insurance fees have risen. We have to pay these before we can work. Pay and conditions are worsening. Most nurses are now working long 12 hour shifts. When I started to train these had just been phased out, apart from Night Duty. We were told that such long shifts meant nurses were too tired and could make mistakes. Why is the same advice not valid now? 

What can nurses do to highlight their plight? There are few actions they can take without jeopardising care. Working to rule, what would that involve? Not staying on after a shift has ended if there is an emergency? I guess some nurses if they have pressing family issues, such as collecting children from nursery, may feel they can’t stay on. But most nurses I know would willingly stay on to help. Not helping a patient in some extra way? I doubt it.

What would I do if I were still working in the NHS? I really don’t know. I would certainly ‘cover’ so more junior nurses can protest in some way. I suspect when it comes down to taking strike action, most nurses will be very reluctant. I went into nursing because I cared about people and wanted to learn how to help people get better. That still holds true for nurses today. The word vocation may be rarely heard, but nurses still care, deeply.

This current government knows this. It’s why they have treated nurses and other healthcare workers so disgracefully when it comes to pay and conditions. Theresa May did not even bother to acknowledge her invitation to the RCN Congress. Whilst the two other party leaders did attend, Theresa was nowhere to be seen. There are 675,000 nurses in the UK how many votes did she loose? 

I have seen at first hand over the last 6 years how hard nurses work. During that time I’ve had 4 different operations as well as other treatment. Most of my nursing care was good. I saw nurses having to care for confused and elderly post-operative patients in a High Dependency Unit. The unit was understaffed, the nurses not adequately trained. There were not enough doctors  on duty either. 

Visiting a friend in a psychiatric hospital last year, the picture was the same. The ward was chaotic and noisy, with not enough staff. There were no extra staff to provide activities either. The reason? More bed closures including the specialist high care unit.

Yes, nurses can protest outside hospitals or Downing Street. But I cannot imagine any nurse leaving the ward to actually withdraw their labour. In itself that would be a breach of the NMC Code of Conduct. Nurses could refuse to do overtime. But the effect of that will be to reduce their pay even further. 

All I know, is that when nurses are protesting – I will join them. Both as a patient and a nurse. 

 

 

Coming to terms with being disabled is never easy. As a disabled person, it hardest for you, but it can also be hard for family members to recognise the reality of your new life.

I am also aware that some disabled people never seem able accept the life they now have. They just don’t want to make that adjustment. All I can say is, only when you accept your disability will you be able to move forward and decide how you will live your life in the future. This what I have learnt so far:

1 Your life is not over

It is just  going to be different. You have to adjust, but you can and will find a way of living well and of still doing things you enjoy. Be open-minded – you will be surprised how much difference that will make to your future. 

As my partner had just reminded me – having fun is important. Try watching a movie at home with ice cream & popcorn. Why not go to a local cafe where you can taste a new dish? My favourite activity is a trip to an art gallery with a scrumptious tea afterwards. Find something fun to do at least once a month.

2 Beware the Myths

Someone will always tell you of a miracle cure – or say you haven’t prayed hard enough. I do not believe either of those statements. You will have your own religious or spiritual take on such advice. As a child I was taught “God does not give us burdens we cannot carry”. But that isn’t true for everyone either. (For the record I’m Jewish and do believe.) Finding a way to acknowledge the advice of others, without following it is a skill worth learning.  Be firm, to protect yourself.

3 Be Organised

Being disabled requires super organisation – plan ahead and save energy for the things that matter to you. People often marvel at what I manage to do within a day. Part of how I achieve that is by planning ahead and thinking though what I don’t need to do, so I can achieve the things that really matter to me. I use lists and reminders. I use my wheelchair to carry things from one part of my flat to another. I save energy as much as possible. Never stand when you can sit, never sit when you can lie down.

Getting dressed is tiring for me – so I never change clothes more than once a day and often not until I’m going out out. If someone thinks I’m lazy, that’s their opinion, I know differently. Putting clothes away and sorting laundry is even more exhausting, so that’s always a job for my carers. Little things can make a big difference.

4 Get some practical help

If you can get a good care package from your local council, go for it! It may take sometime to get everything to settle down, but persevere, it’s worth it in the long run. If that is not an option, a small amount of paid help of some sort will make life easier not just for you – but your family too. You might also be able to rent out a room in exchange for some care services. Explore options, be creative.

5 Having a purpose in life is important

Especially so when you are disabled. I see it as being both therapeutic and necessary. Maybe it’s writing a blog like this one. Maybe it’s sharing a skill. Find something that really matters to you. Even if you have multiple restrictions, by doing just one thing you will have achieved something important for yourself and for others.

I manage a two websites, four Facebook pages and three Twitter feeds, for local groups, all from my bed!! It doesn’t earn me any money, but for me what’s more important is I’m contributing to causes I believe in.

 

 

 

 

 

 

Before the real work can begin………

The old flooring

I moved into my lovely wheelchair adapted flat at the beginning of last year. It is a great flat to live in and I’m happy and settled here. Unfortunately, I quickly discovered very quickly that my bathroom needed new flooring and a proper shower seat. As a temporary measure I bought I stand-alone shower seat. But due to the dip where the shower drains away it was very unstable. I needed a fixed shower seat. The flooring problem should have been equally easy to fix. I knew that would need authorisation from a Occupational Therapist (OT) from my local council. I had already been very unimpressed by the way my transfer of care hours had been handled. When the OT finally visited I was not surprised to discover that she was very unhelpful.

Having been responsible for the re-fitting of bathrooms in several nursing homes, it was obvious to me that the flooring was one that had been discontinued over 10 years ago. The reason being that it didn’t wear well, was difficult to clean and was very slippery when worn. The OT would have known this. Her tactic was to imply that I was making a lot of fuss about needing new flooring. I had ‘managed’ for 2 months so it clearly wasn’t unsafe. This was despite telling her I had slipped and fallen. I also explained I now needed someone with whilst I showered. Another loss of independence. 

Eventually, she reluctantly agreed new flooring and a fixed shower seat were needed. It look another 3 months for her report to get emailed to the housing manager where I live. 

About two months later, a firm of contractors turned up to fit the new seat. The fitter was a qualified OT. Instantly he knew that the seat she had ordered was the wrong one for me! More delay. Another month went by before the new seat was delivered. The day it was due to be fitted I was too ill to get out of bed. So the fitters did measurements from my wheelchair. Somehow, these were wrong. When I first used the seat I quickly discovered my feet did not touch the ground. So it was still too unsafe for me to use! It was also not fully against the wall, meaning my bathroom storage unit no longer fitted under the shower curtains. 

By this point I was too emotionally exhausted to try and get it fixed. But, in the back of my mind, I had a plan. After another 4 months my housing officer finally got round to getting estimates for replacing the flooring. When the chosen contractor spoke to me he agreed to move the shower seat whilst the floor was being done. He is also fitting a new bathroom radiator for me. The current one is too small and the bathroom always feels cold. Two new cupboards will also be fitted to the wall. All for cash in hand! 

I’m so looking forward to getting this work done. 

Part 2 – to follow on completion.

 

 

 

 

 

 

A heartbreaking blog post from Kitty S Jones, showing the cruelty and fear of the current UK sanctions regime against disabled and sick people.
Kitty runs both a blog and a Facebook Page.

Politics and Insights

Salena Hannah (Photo: Adam Sorenson)

A woman who suffered a heart attack during a job centre in-work progression interview has said she was too scared to get up and leave to get medical help as she was afraid of ­losing her benefits. Salena Hannah, who works part-time, says that she had the attack during her appointment, but was ignored by the “callous” job centre interviewer.

She explained: “I had been suffering with chest pains for about two weeks and took a couple of sprays of GTN spray, to help with my angina, before I walked in to meet my interviewer.

“My job is under 16 hours, so I am forced to attend regular meetings, or my benefits might be stopped.

“I was feeling some really bad pains in my chest and I told her at least two or three times that I was in agony, but she was just so callous, she just kept…

View original post 1,674 more words

#CripTheVoteUK

Getting disabled people to vote

Crip the vote started in the US in February 2016 during the run-up to the last presidential campaign. It is a nonpartisan online movement activating and engaging disabled people on policies and practices important to the disability community. It is grounded in online conversations encouraging individual and collective action in the face of inequality, ableism, and oppression in all forms.

Their campaign was – and is –  high profile and has incentivised many disabled people to get involved in politics and vote for candidates whose views would best serve disabled people. Although that election is over the campaign continuesActivists are now looking to move into other forms of political participation.

Now Crip the vote has launched in the UK. Started by some campaigners from DPAC (Disabled People Against Cuts), it has had its own blog, and is on Twitter, Facebook and Instagram.

DPAC have organised or been involved in all the Direct Action protests against Austerity Cuts in the UK since 2010.  Their visibility for those of us who may be unable to be involved so publicly for whatever reason, has highlighted the inequalities faced by disabled people.

I’m proud to be part of #CripTheVoteUK. As my friend Dennis Queen said; “Disabled people are quite literally voting for our lives. We need ALL voters to know this is an emergency for thousands of disabled people and help us fight back.” 

You can read more about the campaign here.

Did you know both the United Nations and the UK’s Equality and Human Rights Commission, have condemned the UK government for many abuses against disabled people?

Did you know that at least 10,000 disabled people have died in the last 7 years (since 2010) within 6 weeks of being declared ‘Fit For Work’, and the government has ignored warnings from its own research about the impact of their regime? The next Labour Government has pledged to scrap these cruel tests.

Those two facts alone, should make any voter think hard about what sort of a country the UK has become under the last three Tory led governments. Don’t forget the LibDems were part of this too. 

This is why I’m voting Labour at this election. If you live in a constituency that is already a Labour seat or could become one, please join me. If you live in a seat held by a Tory or LibDem vote for the party who can most easily unseat the sitting MP.

Disabled people, our families and friends make up almost half the UK voting population. Think what a difference your votes could make? 

By voting for a Labour MP you could, quite literally, be saving the lives of disabled people.

A shorter version of this blog post has been published on the Huffington Post UK site, where I will be blogging regularly.

Access to venues without the hassle

Have you ever turned up to a theatre or exhibition and discovered you needed documentation to prove you were entitled to a discount?  I certainly have and am sure so have most disabled people. 

Now that problem is solved by Access Card.

This card verifies that you are disabled and in most cases are in receipt of a disability benefit such as DLA or PIP. If you do not get these benefits there is plenty of space to explain your disabilities on the form. It is also possible to download a paper copy of the form and send it in by post.

I’ve just filled out my application on-line and it was relatively easy.  Though I did have some difficulties. There seemed to be no way of moving from one box to the next to input my name and address details. I had to keeping hitting the next button at the bottom of the page which was annoying.

You will need to have a copy of your benefit letter, a copy of some photo ID and a separate photo for use on your card. All of there were easy to upload on the the Access Card site. 

Now I have to wait for my card and I’ll update this post when it arrives and I’ve used it.

 

 

Many years ago, in what almost seems like another life, I encountered Ian Brady. In 1965 he, together with Myra Hindley were convicted of murdering 5 children. She died 15 years ago, Brady died yesterday.

At the time of the murders the pair were dubbed the Moors Murderers. A name that is still used, as the bodies of the children were buried on the Yorkshire Moors. I was just 10 at the time, but remember the newspaper coverage.

Little did I ever imagine that I would meet Myra Hindley or encounter Brady. My meeting with Myra, is still bound by client confidentiality. I met her in connection with a client who lived on the same prison wing. My client is still alive and I can say no more of my meeting.

My encounter with Brady was different. The client I was seeing is now dead and whilst I still will not name them, I can tell a little of their story.

My client was incarcerated in Ashworth Special Hospital in Merseyside. Brady was also there and happened to be on the same unit.  My role was to help a Mental Health Tribunal decide if my client should be released on licence. It was an unusual case, for my client was transsexual. They had been kept in the Special Hospital system purely because of their diagnosis. 

Jacky, as I will call her, lived in her room as a women. She did not mix with the other inmates whist she dressed that way. But had to dress in male/androgynous clothes for communal meal times. 

Back then, I was able bodied, and had also visited clients in Broadmoor, another Special Hospital. So I knew what to expect and was aware I would be escorted, except when I was with my client. I knew from Jacky and the newspapers that Brady was on the same ward. I certainly hoped I would not have to interact with him in any way. Fortunately I did not need to, as Jacky voluntarily spent all of her free time in her own room. 

On my first visit, I went though all the usual security and was escorted across to the ward. I met and spoke with staff and was then taken to see Jacky. She was delighted to met me after writing and phoning me for over a year. To get to Jacky’s room I was escorted through a locked sitting area. I was hyper-vigilant as always in those environments. So I soon noticed a very thin man with penetrating eyes staring at me as I walked past. Only when I got through the gate to the rooms did  my nurse colleague tell me the man who stared so hard at me was Brady.

My time with Jacky was positive. I was impressed by how she had coped with recent cancer surgery. Even though she was left with an appalling scar. She kindly made me tea. Part way through our session I realised I needed the loo. I asked Jacky, where the nearest loo was. She told me that I would need to ring for one of the staff. The only women’s toilets were the other side of the locked sitting area.  So, with no other option, I used the bell and asked to be escorted back to the women’s room. Each time I walked across the sitting area, I could feel I was being stared at.  The other inmates seemed doped on medication and ignored me. But I could almost feel the penetrating eyes of this killer, staring right through me. It was very unnerving. 

I had met other violent killers and murderers. Sometimes I felt uncomfortable being with them. This seemed very different. Why? Was it because he had killed children? It was obvious that he like the other inmates were heavily medicated. I was never really in any danger. I had been on prison wings before. But yet I dreaded that walk. I still can’t say why. All I know what that on future visits to Cardinal Ward I used the women’s room before I started work. I also didn’t drink any more tea with Jacky. It wasn’t till after her release that I told her the reason.

Sadly Jacky died a few years after her release. But she had achieved the surgery she so wanted and found some happiness. As for Brady, he will not be mourned. Some are angry that he took secrets with him. All I know is that he seemed to be the personification of evil.

The Irony of Randomness

This is the week organisations and employers are encouraged to make sure they have structures in place to support staff who may have mental health issues.

It is also a week for some to feel able to talk about their own mental health diagnosis. Another way of marking the week, as many election candidates have done, it to look at ways our NHS should be doing more to prevent young people going into crisis. 

But for me, this week has been one of stress and worry, which could easily be resolved. Under the cruel Tories, I and so many disabled people continue to suffer unnecessarily. I receive DLA and was given an indefinite award 8 years ago. I should not need to be re-assessed. But then the rules changed. Everyone, no matter what their condition, has to be checked up on. This includes people who were born with severe mental and physical disabilities who cannot do anything for themselves. 

Two weeks ago, the dreaded envelope dropped through my letter box. The DWP require me to complete a 24 page form asking asinine questions about my health and what I can and cannot do. This week I have to return it. The irony and randomness of having to so during Mental Health Awareness Week is not lost one me.

Luckily, I’ve recently registered with a new GP and seen a new Consultant so my ‘everything you need to know’ A4 sheet is up to date with diagnoses and medication. I have also got a supporting letter from a Nurse who knows me well. I have warned my GP and consultant they will most likely be contacted.

I have 5 long term conditions, none of which will ever improve. I understand and accept that. But the DWP tick box managers clearly do not. Every 2-3 years they send me another form to complete, with questions on it that bear little relation to my everyday life. Can I lift or move a box? Can I put a pen in a top pocket? Can I touch the top of my head? 

Those of us with arthritic conditions, blood disorders or neurological symptoms, my friends with MS or Parkinson’s, all of us have to  go through this stressful process. It is totally unnecessary. The DWP could, much more cheaply, employ Doctors or specialist Nurses  to paper-check on-going claims. This would ensure those of us who can never return to full health, will retain our allowances. People who may have been debilitated after an injury or by an illness which is curable, would also be assessed and either be transferred to long term benefits or supported back to work.

The same could be true for the many people I know with mental health problems. Some people with a mental health diagnosis will never be stable enough to hold down a job. Forcing then to try and do so is most likely to end up exacerbating their already fragile mental health. 

So this week, I’m merely surviving. I want to thrive and focus on my writing projects, and doing some cyber campaigning for the election. But that’s not possible. I have the Sword of Damocles hanging over me. Will the money I need to live on be cut? Will I keep my car, which is my absolute life line? These are the thoughts that occupy my waking time and stop me sleeping at night. 

What would enable me to thrive? An questionnaire checking up to make sure I have enough support and care hours? That might help ensure I can live something approaching a normal life. The questionnaire could check if I’m socially isolated. Thankfully I’m not, but so many people are. It could also ask if my home is safe to live in, am I free from harassment, and if I can afford to keep warm in winter? 

All of those things would improve my life. Filling out a form to tell someone, with less qualifications than me, the obvious only causes me and all other disabled people stress and distress. 

Maybe next year the focus of the campaign should be to get politicians to understand how to help us thrive and not be burdened with having to just survive. 

 

 

 

 

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