Tim Shakespeare's presentation - 22 March 2013

Tim-shakespeare-photo
Our first presentation of the day was given by PhD student and research assistant, Tim Shakespeare.  

He has been instrumental in helping us get the IT side of each meeting on-point, being our back-up technical go-to-guy and making sure we all have WiFi access in the room.

On that point, the video file below has been recorded and edited by Neil Hoskins, a member of the support group, whose late mother-in-law had PCA.

(download)
 

Carers only meeting - 22 January 2013

The Gilliatt Lecture Theatre, which is on the ground floor of the National Hospital for Neurology and Neurosurgery, London, WC1N 3BG has been booked for Tuesday January 22nd 2013.

We will meet from 12-45pm for a 1 o’clock start and will finish by 3.30pm. Topics for discussion will combine the knowledge of several support group members and an invited speaker.

The exact programme is still being finalised but is expected to include:

  • the issues surrounding finding a care home
  • funding care in the care  home
  • how the care home accesses care services, e.g. GP, specialists, physios, etc.
  • state aid for those with PCA - and how to get it!
Please email Jill Walton if you're able to make the meeting: jill.walton@ftdsg.org 


Audio file for 22 June meeting

Audio
Just realised that there is a recording of our last PCA meeting held on 22 June 2012 in the archive of the PCA Discussion Forum.  It can be listened to here: please be aware that it's almost 56 minutes long.

I have also included here the pdf version of Seb's PowerPoint presentation:

Click here to download:
120622_Seb_Crutch_presentation.pdf (535 KB)
(download)
If you find the link is password-protected, there should be instructions on the Forum's home page to request a login.

I recorded today's meeting and will endeavour to get it edited and uploaded sometime in early November. 

PCA Support meeting - 26 October 2012

Mef_logo

The meeting will be held in Wilkins Haldane Room, UCL, Gower St, London, WC1E 6BT. Time: 11am - 2.30pm (coffee will be available from 10.30am).

Neil and Linda Hoskins will be giving a brief guide to use of the forum and quickly run through the history of online discussion forums and go over the pros and cons of different formats.

As always, if you're planning to come, please email Jill Walton so she can get an accurate idea of numbers: jill.walton@ftdsg.org. Thanks!

See you there!

PCA - a summary

PR professional, Danny Whatmough asked on Twitter tonight: "Does anyone actually use Siri?"

My response was "Yes - PCA patients. While they are still speaking but not seeing properly, they find it useful."  I needed to point him to somewhere sensible for a more detailed explanation of the condition and realised this blog was missing one.  

So I had a dig around the internet and came across the document that appears below.  It was posted on a Yahoo! discussion group and written up by specialists at the Mayo clinic in America so the references are naturally US-centric.  All the same, it does a good job...

Click here to download:
Posterior_Cortical_Atrophy.pdf (114 KB)
(download)
 

September 2012 newsletter

The newsletter is a little unclear in the meeting announcement, but Jill wanted to get this information out asap.  Therefore we can confirm that the Friday 26 October meeting will take place in the Wilkins Haldane Room, which is in the same UCL building as we have used for the last two meetings.  

The address details are given in the newsletter and there will be notices around to direct you.  It's not far from the Old Refectory.

The next two meetings have also been booked for 22 March 2013 and 5 July 2013.

 

Click here to download:
Newsletter_Sept2012.pdf (1.92 MB)
(download)

In celebration of Wendi Harrison Kelly

Wendi

The celebration of Wendi's life yesterday was wonderful; she was a truly gifted and intelligent person and the place was literally packed to the rafters with friends and family. 

Now I'm back home, I've googled her and found this lovely piece of writing from 2002 that marked her retirement from Prospect, the Civil Service Union:

"WENDI Harrison started off with six courses and ended up with 36. That’s the measure of how she expanded the IPMS training programme during her 10 years as training and development officer.

Wendi retired in May (2002) as head of the recruitment, education and organisation unit in order to “smell the roses” and work as a freelance trainer. She leaves behind a programme that regularly attracts more than 500 Prospect representatives each year and is accredited through the Open University Validation Service for a certificate of higher education.

For her last three years at IPMS, Wendi also headed the union’s recruitment effort, a period which coincided with steady membership growth after years of decline.

Wendi came to IPCS as a negotiations officer in 1976, fresh from working in Coventry as a Unison rep. She looked after the nuclear pitch, the Home Office and the first privatised civil service body, The Radiochemical Centre, later to become Amersham International. She moved on to the agriculture pitch in 1980 where she campaigned hard against cutbacks in research and started the tradition of taking a union stand to the Royal Show.

After negotiating the number of units of redundancy in the Agricultural and Food Research Council down from 149 to 80, she moved again – this time to look after heritage and the research councils, followed by the Department of Transport and the Property Services Agency.

Wendi then did a spell as training officer for the Council of Civil Service Unions before returning to IPMS in 1992 and taking over the union’s training brief.

She said:“I’ve had a great time and loved every minute. Prospect representatives are wonderful people who give up their time and energy on behalf of colleagues. They made it all worthwhile and I shall miss them."

Barnet Social Services visit - 20 April 2010

Here's an old post from my main blog that relates to a visit from Barnet Social Services:

We had a visit yesterday from the manager of the Barnet Social Services department that looks after families such as ourselves. Her name is Eileen Ratling and she was wonderful - a true professional who rolled with the challenges we usually face when we have visitors to meet my mother. She avoided asking lots of questions as this tends to confuse dementia patients and clearly communicated what was and wasn't available to us.

This is what we have learned:

- Mum's savings are too high to qualify for Direct Payments which would assist with the carer costs. However as Eileen rightly said, if her savings were low enough to qualify, the quality of care wouldn't be anywhere near as good as we currently have
- Non-means-tested respite care payments are available to Dad for 6 weeks in a year. The value is equivalent to their standard contracted rate for a registered Care Home minus Dad's contribution towards it which is £10 per night. We've filled in the form for assessment and hope to be awarded one week's respite as a trial

- We would also like to investigate having someone help Dad with coping strategies counselling. My sister's experience of having counselling via Barnet Social Services was very positive and it sounds like the small charge they make is well worth it!!

We know Dad found his support group experience less than helpful - as he says, they're full of women moaning about all the stuff they have to do for their husbands. This doesn't sit well with him a) from his male perspective and b) for all the stuff he does for Mum and NEVER complains!

For me, getting him this kind of counselling is important for two reasons:

1  without taking a mild sleeping pill, he's on edge listening out for Mum and therefore doesn't sleep. He's been on them every night for about a month now and although this doesn't currently represent a problem, I'm worried about their long-term use

2  the one thing Dad does well and really enjoys, is going to his sports club and from being top of his division, his scores are now slipping. He says that since Mum's recent deterioration, he can't focus like he used to; he's constantly keeping an eye on the time to be sure he's back when he's said he'd be back. This is partly a carer issue but also because of Mum's behaviour ie needing to know where he is, what he's doing and when he'll be back.

As this is his only recreation/leisure pursuit, it's important he properly switches off from his caring duties so having some workable coping strategies for this is going to be invaluable.

Despite being the manager of the department, Eileen is happy to be our main contact - she has already replied to our email asking about counselling with the web address and who we need to speak with.

I'm confident we're in good hands!