REMEMBERING AMEENA ROBERTS

How do you say goodbye to someone you have worked with for 10 years?

Ameena Roberts was a bit like me, someone who has been part of Neurosupport, on a Tuesday for a long time, along with Jessie (now retired), Margaret (now doing a different day) Wendy and me. Over those 10 years, as I got to know Ameena and her husband Phil, one thing you noticed about her was her smile, she could make the grey day brighter in that moment when you saw her. Her sense of fun and laughter was always with her. She had problems with her health over the years, but she kept smiling through all her bad times, as well as the good.

Over the last 2 years Ameena had been in and out of hospital, (more in than out I’m afraid) but last year she did put in a brief appearance on reception, taking her old job back answering the phones. She and Phil joined us on our canal boat trip in October last year and even when we were all cold towards the end of that day, Ameena still kept smiling. For a brief moment in time we were all back together again and recaptured our sense of fun and laughter, remembering our times together, when it became clear that Ameena would not return to work again. Over the last year I have visited Ameena in hospital many times, my last visit just a week before she died, and even then although she was very ill, she still had her smile and her spirit always shone through, something that I think we will all miss, I know I will.

I would like to say thank you to everyone who wrote on the card and contributed to the collection for Ameena, which Phil has donated to ward 19 at Aintree Hospital, where Ameena and Phil were both looked after; Phil said to me the staff went that extra mile for them both The money will be divided between buying a piece of equipment for the ward and the nurses social fund. Alan Clark.

NEURO NEWS— NEWSLETTER FOR VOLUNTEERS OF NEUROSUPPORT MAY/JUNE 2010

MAY/JUNE 2010 ISSUE 15

CELEBRATION OF VOLUNTEERS’ WEEK

The first week of June was volunteers’ week. Volunteers’ week is an annual event which celebrates the fantastic contribution that millions of volunteers make across the UK, a time when we all get a pat on the back. The week plays a huge part in raising the profile of those who regularly contribute to society in this way, while inspiring others to get involved too.

On the 1^st June, we met at Neurosupport for our celebration, with tea, cakes and company. Our chair of trustees Mr. Ken Morris and his fellow trustee David Britt joined us. Mr. Morris later presented certificates to volunteers. It was good to see some new faces, along with shall I say “The Usual Suspects”, but in a good way.

The raffle was won by Ron Kermode, his prize being a lovely basket of toiletries, which I know has now been divided between his daughters, after I mentioned to him that the beauty treatment wasn’t working. We all enjoyed the tea & cakes, along with lots of catching up.

So why do we volunteer? For me the answer is simple “To give something back”. This is probably the most common answer, along with “To meet other people”. There is of course the fringe benefits, i.e. food in the guise of Tony (“There is food left from the buffet, as some didn’t turn up for the meeting,”) Bonner. If you happen to work on the day when Tony says “help yourselves to food”, a plague of locusts springs to mind.

Recently, when we were asked by Danny Start to write something about ourselves, that he could use when the media contact him for items about Neurosupport. I had, as it happens also been asked to write my story, from the view point of a carer for someone who has had a Brain Haemorrhage, (in another role I am on The Brain Haemorrhage Support Group Committee). Here are a few extracts from my story, they may be something other carers will read & perhaps relate to. If you would like your story to be used either by Danny, contact him in the first instance, he can help you (if needed) to write your story. Let Danny know if you want it to be featured in our newsletter, he will then pass it to me for inclusion in the next issue; so to part of my story.

THE STORY OF A CARER, ALLEGEDLY,

AND WHY DAFFODILS MEAN SO MUCH

So why do daffodils mean so much? After 5 weeks of not leaving the house, (the shaved head down one side is not the best look on a woman), but with gentle coaxing, we had a walk down to Sefton Park and sat on a bench, surrounded by daffodils, in full bloom, for what seemed a life time, we both knew that we had been lucky, and life as we knew it had changed forever, we had been given that second chance.

Why allegedly a carer? well I am not sure who looks after who, as I have some health problems and as we both grow older we have slipped into a rhythm of life that suits us both. As I write this, in the Spring of 2010, 14 years later, the daffodils are still in bloom but some are fading and dying. I remember that time on the park bench, we both do, that wonderful day when we sat surrounded by daffodils. Life has been different for us both, work was not possible but volunteering for me was. We had gone to a meeting about brain haemorrhage and a possible support group that was held in the then Glaxo centre, (now Neurosupport) in Liverpool city centre. Over the coming months we went to meetings at this centre, by now 2 years had passed, and when I heard they were looking for volunteers to help staff the patient information desk at the new Walton Centre I signed up. “To give something back”, a phrase you hear a lot in volunteering, so in September 1998 I went on an induction course and have been here ever since. My role has changed over the years, although I still volunteer, I now also represent the volunteers at staff meetings, write a newsletter, and contribute to our own blog. Following my long association with The Walton Centre, when it achieved Foundation Trust status in 2009, I became a hospital governor. One of my other volunteering roles is being a committee member for The Brain Haemorrhage Support Group, a cause very close to my heart. To give my time and to help others in a similar situation, this has given me the greatest reward of all. So when our lives changed in 1996, maybe things did happen for a reason who knows. What I do know is that every year we always enjoy the daffodils and remember.

Alan Clark.

SOME MORE PICTURES FROM OUR TEA AND CAKES FOR VOLUNTEER WEEK 2010

TEA PARTY JUNE 1ST 2010

NEURO NEWS MARCH APRIL 2010

I THINK WE CAN WORK OUT WHERE THIS SHOULD BE
THIS REFERS TO WHAT HAPPENS IF YOU DON'T MAKE THE LITTLE BOYS ROOM

Snatches of conversation and other things.

Am I getting too old? A question I ask myself most days. The world has changed so much, from coal fires to central heating, from press button A to walking around with a phone.

I had a conversation with a friend the other day about someone, who is (let’s just say a little bit younger than both of us in their years), still in school and who was wondering what coal was? (see I told you I had a bus pass). “How do you build a fire” was the question?, the young grandson asked when my friend collected him from school.

When using my pass, now and again I listen to snatches of conversation on the bus, “I’m on the bus, I should meet you in the Pilgrim in about 5 minutes”, “Did you get that email I sent you the other day about that 4 page spread” or (at the religion that is Saturday’s Greatty Market) “What size does your Tony take? they have some coats here for only £5.00” and the last one I heard, as I was visiting that well known restaurant Mackey Dees with my great-nephew, (where else do you go with an 8 year old after school, when he has had a hard day killing baddies with me on a PS3 game before school, then he had to give a presentation using his pen driver (his words) on Cocoa Beans to his whole IT class, he did get a clap when he finished so he must have got it right).

Without going into too much detail it involved the little boy’s room and a conversation on the mobile phone in the only last place where you can have a quiet reflection on life and other things, needless to say there was much laughter when we related the story to Sally.

But do we need to hear all this chatter that is going on around us?

(The picture on the right is an example of what may happen if you don’t make the little boy’s room.)

There are other snatches of conversation that I hear too, “I forgot to ask the doctor about” or “What did he mean by that, what does it all mean?”, “What’s an MRI scan?”, “How long will I have to wait for the ambulance?”. These are snatches that I hear while I sit at the Patient Information Desk at The Walton Centre. Sometimes these are punctuated with tears and the frustration of the diagnosis that the doctor has just given, these snatches of conversation have changed their lives and the lives of the family around them, forever.

To all the snatches of conversation that we hear as we go about our daily lives, they are all important to the people holding the conversation, even the man in the little boy’s room.

VOLUNTEERS PROFILE

My name is John Evans, a volunteer for “Neurosupport”. I think I’m in my ninth year (maybe tenth) and the majority of my volunteer time is at the “Information Desk”, at the Walton Neurological Centre.

I am also a volunteer for the Merseyside branch of the Myasthenia Gravis Association and have recently become chairman, for a second time. Two years ago I had completed seven enjoyable years for the association.

In November of 2009 we organised a charity fundraising ball at the “Marriot Hotel” in Liverpool for the association. To raise funds, it was decided to have an auction at the ball, beside a four course meal and entertainment. Items included in the auction, were signed shirts from different football clubs (i.e. Wayne Rooney, Stephen Gerrard, Tim Cahill, a Rangers team signed shirt and a limousine for ten persons) and many more. One of the committee members worked extremely hard in obtaining the items.

An amazing amount of £11, 000 was raised. This helped the branch to raise an amount of £21,000 for the year and we were rewarded with the Charles Read trophy, a trophy awarded each year to the branch that has raised the largest amount through fundraising. (See photo)

We were so delighted that we are currently arranging another ball for 27^th November 2010. If you wish to contact John concerning MGA or maybe make a donation please phone 0151 480 5231.

On a personal note, I attended the MGA AGM (How many points would you get on Scrabble?) on 27th April, to talk about Neurosupport and The Walton Centre, where I received a very warm welcome from John and all the members, so thanks for the invite.

Which brings me on to the advert for the forth coming meeting in The Walton Centre

MEET THE WALTON CENTRE GOVERNORS

As you may be aware, someone elected me a governor, so thank you to those 2 people, who can now come along and meet us all from Cheshire and Merseyside 12 in total on 24th June starting at 4.30pm at the Clinical Science Building just behind the Walton Centre (the big white building) and have a talk and get some information. Everyone is welcome, members and non-members alike. See the full article in the latest Glance and Neuromatters and keep a look out for more information on posters nearer the time.

Minutes from Volunteers Meeting 22/02/10

Maureen welcomed and thanked those present for attending. Those present introduced themselves and their role.

Staff Update/Move

Maureen informed the group that finance and admin staff will be swapping with Working Life service staff

Alec Hughes will be working full time from the beginning of March. Volunteers requested he give a presentation of what he does at the next meeting.

Fund Raising

Maureen set a date for the fundraising committee to meet.

The aim will be to come up with several ideas and take these forward.

Maureen informed the group about the work being done with Tesco. Overall aim of which is to become Tesco charity of the year and raise awareness of Neurosupport.

Alan Clark mentioned his idea for a ‘Head Matters’ event.

Volunteers suggested several events we could get involved with.

Health and Safety- DVD and Evacuation chair demonstration

Chris wall showed a health and safety DVD this can be shown in small chunks

Maureen informed the group about the successful capacity builders grant and the alterations this would bring, new lighting, automatic doors, smart board etc.

New Telephones and telephone training

The new system is imminent a training session will be set up as soon as it is complete

Christmas party. Alan asked volunteers what they thought of holing the party outside the building.

Following discussion they agreed to hold it in the centre on alternate years.

Volunteer week /carers week. The group were asked for ideas on what they would like to do during these weeks.

Any suggestions for a volunteer day out this year are requested but consideration on how to fundraise for this needs to be addressed

Training for 2010 Training for the coming year was identified as

Diversity

Disability Awareness

Date and Time of the Next Meeting Thursday 29^th April 2010. 1-3pm

Morris, an 82 year-old man, went to the doctor to get a physical.

A few days later, the doctor saw Morris walking down the street with a gorgeous young woman on his arm.

A couple of days later, the doctor spoke to Morris and said, 'You're really doing great, aren't you?'

Morris replied, 'Just doing what you said, Doc: 'Get a hot mamma and be cheerful''

The doctor said, 'I didn't say that... I said, 'You've got a heart murmur; be careful..'

**********

I like long walks, especially when they are taken by people who annoy me.

I have to walk early in the morning, before my brain figures out what I'm doing..

************

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Volunteers update

A couple of the volunteers from the Walton Centre Patient information desk have recently left, Joanne Hurley and Maria McGowan. I worked with them both and wish them well for the future

Disclaimer-The opinions expressed in this newsletter are personal and do not reflect the opinions of Neurosupport

A couple of the volunteers from the Walton Centre Patient information desk have recently left, Joanne Hurley and Maria McGowan. I worked with them both and wish them well for the future

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CHANGES

NEUROSUPPORT IS CHANGING. OVER THE LAST FEW WEEKS YOU MY HAVE NOTICED SOME WORK AND MEN IN THE BUILDING HELPING US CREATE A NEW OFFICE SPACE UPSTAIRS AS WELL AS THE NEW AUTOMATIC DOOR OPENERS ON TOILETS.

I HAVE MISSED THE LAST FEW WEEKS AT THE CENTRE DUE TO TOO MANY MEETINGS THAT SEEM TO HAVE SPRUNG UP FROM NOWHERE. SO I HAVE HAD TO HAVE SOME SORT OF HOME LIFE FOR SALLY SO I TOOK THE EASY OPTION AND HAD A FEW WEEKS OFF INCLUDING TOMORROW WHEN I WILL BE ATTENDING A GOVERNORS MEETING IN THE WALTON CENTRE IN THE EVENING. WHICH BRINGS ME TO WE ARE GOING TO HAVE A CONSTITUENCY MEETING 24TH JUNE 4.30PM TO 8.OO PM AT THE CLINICAL SCIENCES BUILDING ON THE AINTREE SITE JUST BEHIND THE WALTON CENTRE SO IF YOU WANT COME ALONG AND JOIN IN ALL ARE WELCOME AND WITH LUCK WE SHOULD HAVE TEA AND CAKES ON THE AGENDA.