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PAT Survey

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What are parents telling us? Here are a few comments selected from the PAT survey results so far.

94.4% of responses come from parents

83.3% feel that PAT represents parents

94.4% have attended PAT groups

38.9% have done so for 1 - 2 years

16.7% joined within last 12 months

33.3% are new PAT members

83.3% have accessed the PAT website

38.9% have more than one disabled child

33.3% have more than one child with SEN

33.3% have a child with complex needs

22.2% have a child with more than one disability

"Most of the time I feel desperate, exhausted, lonely and frustrated. Everything I try to make things better is so difficult." Sun, 11/18/07 3:52 PM

"Why didn't anyone tell me about PAT before? The biggest problem we have had is that there is no one-stop-shop for information and there is no 'joined-up' service commissioning. We just have to keep going round the same loops making the same mistakes over and over again. We have met some absolutley awful people in charge of services and we have had to deal with some criminally incompetent people too!" Wed, 11/14/07

"We've just been so desperate. PAT has really helped. At last there's some hope." Tue, 11/13/07 9:51 PM

"It has become necessary to fight for everything. I have two children with complex needs. They are falling further and further behind. Nobody listens. The schools seem to be powerless to help. Even with their goodwill it has been almost impossible to get effective help. The LEA are not straight, no honest and not helpful. It has been impossible to get a social care assessment. An assessment was refused and we weren't even told about this." Tue, 11/13/07 6:42 PM

"It's horrible having a child that's not 'perfect'. They just don't fit in, and as a consequence, neither do you." Tue, 11/13/07 10:30 AM

"Amateur self-help is a good start. Mutual self-help is an improvement. PAT needs to go mainstream and develop services, funding and paid workers if it will ever make a real difference. There is nothing else out there." Sun, 11/18/07 3:52 PM

"PAT should stop colluding with Sefton managers. PAT should challenge wrong decisons. PAT probably needs to employ trained advocates and people who know the law and know how to use it." Tue, 11/13/07 6:42 PM

"Having fun - organised trips where we can take our kids and they would be welcome." Tue, 11/13/07 9:15 AM

Here are some of the suggestions we have received. You can take part in the latest survey by clicking here. 

Don't forget to sign our guestbook and show your support. If you want to take part in our on-line opinion sampling exercises then click here; check out PAT on the BBC Action Network too.

Comments

  1. Hi! I’m a producer/director with a small, award-winning production company called Walker George Films. We make high quality observational documentaries and have recently been asked by Channel 4 to research a documentary about young people with Downs Syndrome and marriage.

    Does anyone on the forum know of a young couple with Downs Syndrome who are getting married later this year? We have met a couple with Downs Syndrome who are already married who we hope to feature in the documentary, but would like to contrast their experience with that of a couple who are planning their wedding. It might be that both partners have Downs Syndrome, or one has Downs Syndrome and the other a different learning difficulty – but the key factor is that they will be getting married later this year. Our intention is to make a moving, life-affirming and inspirational film showing what these couples can teach us about love and marriage.

    To let you know a little more about the documentaries we make - our more recent film for Channel 4, ‘A Boy Called Alex,’ told the story of a teenage boy with cystic fibrosis who wanted to conduct Bach's Magnificat. It was received with great acclaim. The Times described it as an "Astounding, life-affirming film... the one essential programme of the week...overwhelming", while the Daily Mail called it "gripping, inspiring, uplifting and humbling". I know the Cystic Fibrosis Trust are extremely pleased with the film and it is currently shortlisted for several awards. Other films we have made include ‘Young@Heart’ about a pensioners chorus who sing rock ‘n’ roll and ‘George Melly’s Last Stand’ – a film following the jazz legend’s last months.

    If anyone can think of a couple that they know of who are thinking of getting married and where one, or both, partners have Downs Syndrome, I would be really grateful if you could get in touch. Any conversations at this stage would, of course, be in the strictest confidence. My telephone number is 0208 743 7733 and my email is Katie.buchanan@walkergeorgefilms.co.uk.

    Many thanks,

    Katie Buchanan

     (Posted on 2008-04-02 10:21:00 by Katie Buchanan)

  2. Dear Larry,

    I would just like to take this opportunity to thank you for taking part in Youth Proof. I had an overwhelming response from volunteers and 321 people took part in Youth Proof nationally which really exceeded my expectations. I have attached a spreadsheet of feedback on your website and I really do hope that this is useful to your organisation. This is what some of the volunteers thought of the event;

    "Excellent Idea" "A great event!"

    "I think it is a good way of achieving honest feedback, well done." "I think that this is a really original idea and is a bit different to ordinary volunteering. I think that it also enables people that might have health limitations to participate in volunteering events. It helps to raise awareness of charities that I have never heard of and in turn hopefully will benefit the wider community."

    I’m afraid that I am leaving Volunteering England so I wish you well for the future.

    Thanks, Clare Davies

    Volunteering Development Officer

    Student Volunteering Team

    Volunteering England

     (Posted on 2008-03-29 16:53:00 by Clare Davies)

  3. Making Social Care Work Date: 06 May 2008

    Venue: Queen Elizabeth II Conference Centre, Westminster London SW1

    The landscape of social work and social care is changing more rapidly that ever before. Services face major reform, with the ambition of enabling people of all ages to live happy, safe and fulfilling lives. The General Social Care Council's Annual Conference will explore the challenges for the workforce in delivering these reforms, and making social care work.

    Aims of the conference:

    To provide practical exploration of what the changes to social care mean for those working in, directing and using services To look at how to continue to raise professional standards and accountability as the social care workforce develops To consider how social work training, education and development need to adapt to prepare social workers and social care workers for change To discuss how services for children and adults should work together to meet the needs of individuals, families and communities To promote the vital role of social workers and social care workers in delivering life-changing outcomes for children and adults.

    This is an opportunity to hear first hand about the major developments in social work and social care, and how they affect you.

    To view flyer and booking form please see http://www.pavpub.com/pavpub/conferences/MakingSocialCareWork.htm

    (Posted on 2008-03-27 10:53:00 by Larry Gardiner)

  4. This is a message for Kate O'Brien:

    We received your membership request form. Unfortunately your email address is incomplete or otherwise incorrect as follows:-

    > Date: Sun, 16 Mar 2008 18:09:24 +0000

    > From: mailings@mailer.sitemakerlive.com

    > To: gardinerl@hotmail.co.uk

    > Subject: Membership Application submission from www.pat.moonfruit.com

    > Your email address > katie-lou-@hotmail.uk

    > Your name > kate obrien

    > Membership application > would like to know more about the pat group

    Please send me an email from your account to gardinerl@hotmail.co.uk and I will ask Val Todd or Cathy Taylor to get in touch with you.

     (Posted on 2008-03-17 17:42:00 by Webmaster)

  5. Did you know that on the CSCI website there is a directory of all the care services registered with us? Here you can find independent reports on the quality of all your local care homes, home care and other registered services. Here is where you can find this information http://www.csci.org.uk/registeredservicesdirectory/rsquicksearch.asp

     (Posted on 2008-03-11 23:06:00 by 1cheerfulman)

  6. Any more PAT parents intending to go to the EDCM event in Preston on 6th March who would like to share the car journey please let me know and I'll try and arrange lifts or car-sharing. This event is about PAT parents developing influencing skills and it's going to be great. It's also brilliant preparation for participating in a consultation for those who are intending to take part in the Aiming Higher event at Bootle Town Hall. Be there or be square!

     (Posted on 2008-02-29 16:08:00 by Larry Gardiner)

  7. We have had an offer from a legal expert to come and talk to PAT parents about challenging poor or wrong decisions. If you would like us to arrange a meeting with him and some one-to-one surgeries to deal with your own issues please let me know.

     (Posted on 2008-02-28 09:02:00 by Larry Gardiner)

  8. Mencap are hosting FREE information events called 'Fair Access to Care' on Thursday 13th March and again on Thursday 20th March between 10:30 and 3:00.

    The venue for the event on 13th March is:-

    Tabor Carmelite Retreat House

    169 Sharoe Green Lane

    Preston PR2 8HE

    Tel: 01772 717122

    The venue for the event on 20th March is:-

    Pyramid and Parr Hall

    Palmyra Square South

    Cultural Quarter

    Warrington WA1 1BL

    These events will help you to:-

    Know how the assessment process works and what eligibility criteria you will need to meet in order to qualify for support services;

    Gain the knowledge and skills you will need to help you get the best results from your care assessment;

    Understand the appeals process and feel confident about challenging wrong decisions.

    There will be an opportunity to hear from and to have your questions answered by a leading lawyer on community care law and a co-author of Community Care and the Law. There will also be an opportunity for short 1:1 consultations with Luke Clements. Places for this event are limited so please book early.

    Call Christine Booth on 0161 968 9250

    Email: christine.booth@mencap.org.uk

     (Posted on 2008-02-24 19:37:00 by Larry Gardiner)

  9. A one-off consultation is pretty useless really. There should be a programme of consultation and engagement. What do other parents think?

     (Posted on 2008-02-18 16:52:00 by everton4ever)

  10. A temporary PAT Parent Consultation page has been added to this site as requested. You will find it under the PAT in Action tab at the top of the site header bar. This parent consultation page was requested by PAT parents to collect ideas, information, suggestions and ideas. A PAT parent has also organised a chat room meeting for next Tuesday at 8:00pm. You will need a site account to take part. Apply on-line from the PAT chat room and follow the instructions there.

     (Posted on 2008-02-18 10:06:00 by 1cheerfulman)

  11. Anybody going to Sefton consultation? I'll book Chat Meeting for next Tuesday. Can we have a project page on the site? I want to collect ideas and stuff for consultation.

     (Posted on 2008-02-17 11:12:00 by everton4ever)

  12. Here is how you can get involved. We would like as many parents as possible to become involved in our support groups. As of today we have had visits on this site from over 1600 people but we have only met a very small number. I guess most folk are happy to just get what the y need from this website BUT if you want more then come along and meet us. You will be made very welcome and there are lots of opportunities to get involved. Currently we are also looking to recruit additional parents for our management committee too.

     (Posted on 2008-02-03 22:07:00 by Larry Gardiner)

  13. I've been telling people about this. I want to know what's going to happen next. How do I get involved?

    (Posted on 2008-01-31 12:33:00 by everton4ever)

  14. signed up for freecycle. sounds like a good deal. signed up fir ncb training too

     (Posted on 2007-12-20 16:13:00 by jellybellmuthah)

  15. Thanxx 4 the helpline links.

     (Posted on 2007-12-16 18:36:00 by daveyjones)

  16. The PAT survey is open up to the end of March. New participants are adding to the information every day. The completed report will be published on this site as a free download. There will be a summary report on this page too.

     (Posted on 2007-12-10 10:07:00 by 1cheerfulman)

  17. I did the survey too. I'm coming to the next support group. Can someone help me find a carer?

     (Posted on 2007-12-10 10:05:00 by maddazzafish)

  18. I did the survey thing anyway. Can I get the results somewhere?

     (Posted on 2007-12-07 22:40:00 by everton4 ever)

  19. Wot will U do with all this info?

     (Posted on 2007-12-07 22:39:00 by everton4ever)

  20. Is it possible to get training from PAT? I can't afford to pay. I want to learn how to write a service level agreement for the care package I pay for with individual payments. Who can help with this?

     (Posted on 2007-12-07 22:05:00 by daveyjones)

  21. We could even hand them out and collect them at school!

     (Posted on 2007-12-03 10:04:00 by loopylou)

  22. Why not send out the survey on paper to local groups?

     (Posted on 2007-12-03 08:52:00 by ipso fatso)

  23. Please advertise this survey and encourage people to participate. The more responses we have the greater the credibility that this information will have. We have already used this information in a letter writing campaign and we believe that both Sefton PCT and Sefton Council will adopt a charter of principles for disabled children soon. Everyone can help! Word-of-mouth is powerful publicitiy. Please tell all your friends how they can make a difference!

     (Posted on 2007-12-03 08:41:00 by 1cheerfulman)

  24. if we dont fight for our kids no one else will. it is very hard, and very sad that we have to fight, but we most, to get our childrens the services that they need/want

     (Posted on 2007-11-30 19:45:00 by madmum)

  25. I went to a PAT support group meeting yesterday where I found out that Sefton plans to close the advice department in Southport. This means that if you want specialist advice then it will only be available at CAB. I think we need to campaign to keep the advice service running. If you want to do this then we will start a campaign.

     (Posted on 2007-11-29 16:32:00 by 1cheerfulman)

  26. I would definately recommend a carers needs assessment. They are very good and very thorough at this place. It made me think. If you don't ask you won't get. Obvious!

     (Posted on 2007-11-23 12:50:00 by ispo fatso)

  27. ThanXX.

     (Posted on 2007-11-19 23:35:00 by ipso fatso)

  28. Carers Needs Assessment @ Carers Centre on South Road

     (Posted on 2007-11-19 18:58:00 by loopylou)

  29. No benefits...We don't qualify! No services...They refused to assess and didn't even tell us! No direct payments...The diagnosis doesn't qualify. We're skint, desperate and angry!

     (Posted on 2007-11-19 16:24:00 by john)

  30. I've done the survey stuff. I didn't know about carers needs assessment, where do I get one?

     (Posted on 2007-11-19 10:56:00 by ipso fatso)

  31. Me too! But what choice have we got?

     (Posted on 2007-11-18 17:10:00 by micky)

  32. I'm fed up with fighting!

     (Posted on 2007-11-18 16:40:00 by loopylou)

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Suggestions

"More practical help. More volunteers. A telephone contact or advice service. Home visits. An emergency call-out." Sun, 11/18/07 3:52 PM

"Set up a one-stop-shop and staff it so that it is open every day! Provide a telephone helpline. Home visits would really be useful too. I'm stuck at home quite a lot." Wed, 11/14/07 8:53 AM

"You should open parent's centres. There needs to be something available in Southport, Bootle and Formby because transport is so hard. We need a place to go. We need somewhere to get a break or just ot meet up and talk things out. I feel like I'm a prisoner sometimes." Tue, 11/13/07 9:51 PM

"PAT needs to learn to help parent to fight and PAT needs to learn to help parents win. Well intentioned volunteers are friendly but PAT needs to raise it's game because Seftons managers have been running rings around parents." Tue, 11/13/07 6:42 PM

"A nominated person to help with each area, e.g. statementing, accessing services such as OT, etc." Tue, 11/13/07 10:30 AM

"Provide lunch for the end of the support group meetings. We could all bring something or send out to the chippy. By the time I get home, I have to get the kids from school, so there's no time for lunch." Tue, 11/13/07 9:15 AM

 

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