Post-Diagnostic Support Group Minutes – January 2018

Meeting-minutes-pictureMinutes of the Twenty Seventh
Post-Diagnostic Support Group
31st January 2018

The meeting was attended by 40 people
and once again a lovely “Therapy Dog”.

Linda introduced herself and the members of the Axia team who were present.

The first topic that Linda discussed was an article that has been published on our website regarding “Munchausens Syndrome”. How loving mothers, who have done nothing to harm their child are wrongly being accused of Munchausen’s Syndrome by Proxy. It is wrong how they are being accused of fabricating illnesses. She also said how a lot of these accusations are coming from schools. The full article can be accessed through our website HERE.

Linda then spoke of how this is a very proud time for her and for Axia as we have been nominated by the NAS in the category of “Outstanding Health Service”. This is truly a great moment and we are all very proud and are all rooting for Linda to win this award.

Conference for 2018
Linda announced the date again of our Conference for this year, 21 September 2018 at the Chester Racecourse. There is an “Early bird rate”. The cost of the Conference is £50.00 for people on benefits. £100.00 for the early bird rate and £150.00 on the day or beyond the early bird date. The theme of our conference is Autism: People Behind The Masks. To register for the conference please contact Carly on 01244 567656 or email and methods of payment will then be discussed. We do accept cheque, debit card, credit card or BACS payments.

We brought along to the group a large collection of books and videos and encouraged people to borrow them. Linda said that she only brings books that she has either read and reviewed or books that have been recommended to her. DVDs are ones that Calvin has recommended.

Autism Alert Cards
We have produced the Autism Alert cards which are proving very useful to our members. Dream explained how they can become a “safety net”. He has presented his card three times and has always been treated differently because of this, one funny comment that he received was “are you Autistic”?

Linda asked the group how they found the lighting levels in the room. The consensus of opinion was that the group preferred the lighting off. We do acknowledge that this was a majority decision and that some members preferred the lighting on, it is impossible to please everyone, but we felt that today the lighting was better off. On a duller day this may not be the case and if it is too dull we would put the lights back on.

Expansion of Axia
Linda explained how Axia is now expanding. We now have the following people working for us:

Hannah Williamson: Hannah is a Liverpool Psychology trainee. She qualifies in September and we are delighted that she will be working with us after then. She will be working at least one day and week and hopefully two. She will be presenting the next Post-Diagnostic group and her theme is “Aging and Autism”. Hannah is also compiling an Annual Report for Axia and will hopefully be presenting her findings to the group in March.

Sheena Mansell: Sheena is Linda’s friend who she has known for many years. They go to lots of rock concerts together, bands like Iron Maiden and AC/DC. Sheena has a son on the Spectrum and she will be working with us for two days a week carrying out diagnoses, follow-up appointments and therapy.

Lynn Rollinson: Lynn is a friend of Elspeth Bromiley’s and she will be working with us for one day and week. She will be conducting diagnoses and also will be conducting therapy sessions.

Sue Power: Sue is Linda’s niece and she is an English teacher. She is joining the admin team in a full-time role in April and she will also be our Education Lead. She will be able to conduct school observations in future and this will be very helpful to Axia.

Our Operational Manager Carly was not able to attend the group again and we acknowledge that she is a loss to the group, but we are so busy at Axia that we have to have a presence in the office at all times now. Carly is not only Linda’s right hand, she is also “her left hand and both her legs”. Carly will be training Sue and between them they will attend alternate groups in the future. Linda reassured everyone that just because we are getting “bigger”, we are not losing our core values: our partnership model. Axia is totally committed to the post-diagnostic support group as we benefit and learn from attending as well as enjoying attending.

Open Room
We hold our “open room” at Red Hill House in Chester. The dates of which are on our web site. Our next open room is on Wednesday 7 February between 12.30-15.30. We encourage anyone to pop in, everyone is welcome. It is held in our Anime room. There will be board games, Manga, an opportunity to socialise. If you want you can just sit and talk and engage with us at Axia. This has been set up under the Film Society connection. NB: Dream explained that it will not be possible to connect with the Administration Team or Clinicians during this time as they will be otherwise engaged.
Autism Inclusive
When we were talking about our open room the representatives of Autism Inclusive, Karen and Pod (Jason) announced that they hold a similar project in Crewe.

Karen is now chair and Pod is the vice chair. They are now re-launching and they are funded as a charity. Their group is now hoping to be run as a social group, an activity lounge. They will be holding Steampunk nights, Art nights, “stitch and fit” (sewing). They acknowledge that there is a high “nerd” count now and they want to present opportunities for this. They want to be interactive. They hope to have a Youth Club for kids eventually. They say it can be a geek fest where you can “be yourself”. They acknowledge that it is all about “fitting in” and they want to focus on what people want to do.

One group is held on the first Wednesday evening of every month between 7.00-9.30pm. This time may change in the future and may expand, they are flexible on that.

NAS Conference
Linda announced that we are Gold Sponsors of the Conference that is to be held in March this year. This means that our Logo will be everywhere. We have also been asked to present an award for the “Most Creative Project”. Ren and Cal will be presenting this award in Steampunk outfits.

Linda also explained to the new members of the group how we have co-produced our group with input from our members. The consensus of opinion was that the group liked structure and presentations. We always break for tea, coffee and cakes. Unfortunately Cal was not able to provide cakes for us today as he is on holiday, but we were kindly donated cakes and biscuits by one of our clients, this was much appreciated. Our main ethos of the group is that we are respectful to everyone at all times.

We had a slightly longer break today as we wanted the second half to be a question and answer session.
We resumed for questions:
The first question was “what does Axia mean”. Linda explained that originally Axia was started by her partner Albert, he was later joined by Jim (his dog) and then of course Linda. Axia is the Greek word for Value.

The next question was about how is some situations we say something indiscreet or what can be construed as “inappropriate” without meaning any offence and how we can then ruminate over and over about this and is this common”. The answer to this one is “Yes”. Autism is a disability, people struggle with social communication and interaction. No offence is intended. People with Autism are very honest, moral and do not like breaking rules. They have values. They do not like lies or cheats, and they don’t like it when people don’t say what they mean.

Dream asked a very interesting question around Autism. Simon Baron Cohen had said that he thinks “everybody has some Autistic traits”. Dream said how can you have Autism or traits of Autism. There is a difference scientifically. Most people receive a diagnosis because they have been suffering. This should not be minimised. One of our members Ed said that you could also say that being a bit Autistic, was the same as saying you are a “bit of a billionaire”. You can’t say we have all got bits of Autism. You are either Autistic or you aren’t.

Forest Club
One of our members, Josie spoke about a forest group that she attends. Josie lives near Wrexham, which is only fifteen minutes from Chester. They meet in the forest, they have lunch they make a fire and how this is a group for parents and carers of children with disabilities. The leader has asked her to help start a group for adults on the Spectrum and she wanted to encourage people to attend, everyone is welcome.
Reasonable Adjustments
Dave tried to give some helpful advice in this area.

He said that it is always helpful to have a strategy document. How it is always better to write down what you need. Identify and describe the reasonable adjustments for that situation. Sign this document and hand it over. It is better to have a minuted meeting to discuss these. Dream stated that it might be more helpful if the document is titled “Notice” as they do not tend to ignore a notice as easily as they may a “letter” or a document without title.

Dave stressed that the whole point of a diagnosis is to help with “self-acceptance”. As a person with a diagnosis you have a Legal right to be understood as different. The document that you produce is an official declaration of what you need, it is your legal right for this to be adhered to.

Lynn spoke about the Equality Act and how the “Best Endeavours” should be used as a code of practice to help people.

We hope the group empowers each other. People spoke about it being a grinding battle and how you have to keep fighting. It was also said how to give you social confidence it is helpful if you have an advocate to support you, who can talk on your behalf.

The subject of benefits was raised and unfortunately, we are unable to help with this, we do not have the resources for this and we would probably give you the wrong information.
The following organisations were recommended by members:
  • Space for Autism
  • Cheshire Carers
  • DWP
  • NAS – very good source of information, they have a check list for points scores
  • Fight Back – In Burnley, this is run by a lawyer, they can help
  • DPAC – Disabled People Against Cuts – very helpful
  • MP

Linda thanked everyone for attending and announced that the next group will be held on 14 March 2018 between 12.-1.30.

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6 comments on “Post-Diagnostic Support Group Minutes – January 2018
  1. ronnie says:

    Hope to be able to attend the Open Room although am having Chemotherapy this Thursday and Friday, so it won’t be this Wednesday, which is the day before, Due to the distance if I enjoy the Open Room, I would obviously like to attend every week, but I don’t think this will be possible due to the Cost of travelling to Chester, But I will try to attend as often as possible.
    It is a real BLOW Carly only going to be attending every other meeting and it does affect the meetings for the worse. Linda pointing out about the new people to the Group not been affected the same as us who have been going longer, but why should us people who have been attending longer have to lose Carly to only attending every other meeting because the newer people are apparently used to Carly not attending? It reminds me of I think it was a Bank advert that was on a few years ago where a Customer was not able to have any benefits because they were for “NEW CUSTOMERS ONLY'( the catchphrase from memory, ‘NEW CUSTOMERS ONLY’).That’s how it feels like to me.
    When Carly is absent why is someone else from axia who is at the meeting not doing the report instead?
    Re Positives and Negatives, I’m sorry there are negatives and it is a part of life for some of us Aspergers Syndrome that there are negatives as well as positives,Some are fortunate enough to be happily married and have good Jobs, but it a fact of life that some people with Aspergers Syndrome never Marry or never have good Jobs. So I’m sorry Cancer Permitting which yes I’m positive will, my talk at the conference will have negativity in it It is just the way life is for at least some with Aspergers Syndrome.I’m very pleased that quite rightly those is us who are giving a Talk etc will not be charged for attending the Conference.
    It was slipped out at the very end of the meeting that the next session will be only 1 hour 30 mins duration apparently beyond axia’s Control. If this is due to the Lifestyle Centre? this is yet another reason for changing the venue. I hope the meetings don’t go down to 1 hour 30 mins duration instead of 2 hours and it doesn’t’ matter having long breaks, in fact long breaks can make the experience of the meetings more enjoyable.( The meeting used to be 3 hours ).

  2. Carly Bailey says:

    Hi Ronnie, Many thanks for your feedback which I will ensure is passed to the team. With regards to the Open Room, these are not on a weekly basis but rather specific dates are posted on our website to ensure that the Open Room doesn’t affect the Anime Amigos vlog and of course our post-diagnostic support group. The date of the next Open Room is 7 February. Please do check our website for next available dates which are posted after the most recent one has taken place (I hope that makes sense to you). Carly

  3. ronnie says:

    Regarding the 3 hours duration. When the Group used to meet at the Old Library, meetings used to take place from 1.30pm to 4.30pm,it may seem to long to some People 3 hours for a Meeting, but it wasn’t. The time always went quickly, in fact often 2 quickly. There were always long relaxing, quality breaks, with a chance to have enjoyable conversations or do your own thing. And another great thing about the Time of the Meeting 1.30pm to 4.30pm was the Timing between meal Times with a break at the right time for light refreshments unlike now with the meeting taking place at Lunch Time and the light refreshments always nice, but it’s the wrong time to be having light refreshments messing up with the Lunch and the quality of the Breaks are Poorer due to having to be shorter because of the shorter 2 hours meeting. Although it was rush hour at the end of the Meeting at 4.30pm i didn’t’ mind, because it was always a good day out. I used to set off in the morning not having to rush because the Meeting didn’t start as I’ve said until 1.30pm and in Crewe there are plenty of places you can have Lunch before going on to the Library for the Meeting.
    Unfortunately the meeting time changed to the present shorter 2 hours at the wrong time lunchtime.
    At first I thought it would be a good idea having earlier meetings thinking they would remain 3 hours and I wrongly thought the meetings would be from around 10pm to 1pm, but no I was wrong and the shorter 2 hours was slipped in along with in my very humble Opinion the Wrong Time for a meeting to take place.
    I think it would be much better if we could go back to the 1.30pm to 4.30pm 3 hours duration instead of 2 hours or 1 hour 30 mins? duration.

    • Dream says:

      Hi Ronnie,

      Your comment has been playing on my mind since I read it, mostly because I couldn’t remember any of the Post-Diagnostic Support Group meetings ever being 3 hours, so I finally went back into my calendar!

      As it turned out, back on 9th July 2014 I had an invite to a “Co-Production Meeting” in Crewe. I believe it was held at “Autism Networks” on Prince Albert Street and there were loads of rooms with different people discussing different things, and that lasted 3 hours. However that wasn’t an Axia PDSG, it was something to do with CCG’s and stuff that they wanted feedback with Autistic people (from recollection).

      So I then went back to the first minutes which Axia published, which turned out to be of the 2nd PDSG back in April 2015, which reminded me of the “evolution” during the many months in between (including switching locations to the Library).

      Please remember, although I am referred to at times as part of the “Axia Team”, I have ALWAYS attended the Post-Diagnostic Support Groups as a “patient” (or “client” if that is the preferred term). Like you, I have fond memories of those early meetings, although I never really knew what I’d been invited to or why, I found people were extremely tolerant and it was easy to “walk away” when I needed to due to the various rooms available.

      I can’t say exactly what happened because I do not know Ronnie, HOWEVER, I have a “Crewe A.I. meeting” scheduled for 4th February 2015, and this too was a precursor to Axia’s PDSG’s (because it was hosted by Linda and Axia), and so I think by the 2nd Official PDSG on 29th April 2015 a “format” was being established (which I remember you contributing to having read the minutes, so your comment on them of how useful they are is 100% correct!)

      Personally, 3 hours was too much for me and I remember having to bolt sharpish on occasion due to panic attacks, but that was fine because I could leave and not disturb anybody else.

      I believe the reason the time was shortened from 3 hours to 2 hours were purely on practical grounds. As the group started to gain an idea of “who we are and why we meet”, it became apparent that if there was to be the “structure” of a “presentation” mixed with “discussion”, it took time setting up and dismantling everything. Therefore half an hour before was allocated as “preparation” and half an hour after for “clearing up”. This way it ALSO meant that for those of us that arrive a “little early” we would not have to be waiting around feeling awkward in what at times feels like an “unknown land” to me.

      I also agree with you that an hour and a half doesn’t feel long enough, but from my understanding this shortened upcoming PDSG is a “one off” caused by… let us be kind and say “a miscommunication by the Council” (I say “Council” as I’m sure they’ve got something to do with the Lifestyle Centre, but even if they haven’t, it wasn’t Axia who double booked!!!)

      And I do want to say Ronnie, I may have been the only voice agreeing with you at the last meeting when asked if it was more gloomy with the lights off, and it was. I like light, unfortunately some people are affected by those strip lights in ways I don’t appear to be, so I have to live with “gloomier” as a compromise, which in honesty is a minor sacrifice! I came out of a meeting at the library once and was sick in the car park and then outside the police station, I couldn’t say what triggered it, but it definitely wasn’t as trivial to me as whether the lights were on or off!!! It’s like when the meetings started alternating between morning and afternoons, I couldn’t park in the mornings in those days (back in the Library) which created huge amounts of stress for me, however with the Lifestyle Centre and the changes to the car park, I no longer ever have a problem finding a space, which is a MAJOR plus point in my book.

      Anywayz, sorry for the long response, you just got me curious about the whole “timings” thing Ronnie (I know your recollection is more accurate than mine often) and it led me down a “historical rabbit hole”!

      All the best, hope to catch you at the March meeting.

  4. Ronnie says:

    Hi Dream,
    Sorry for the late response, my Tablet went wrong and I had to get another Tablet.
    I preferred the 3 hours and the half hour before and after to me makes 3 hours even more important because of quality time for the same reasons as before. In fact that means even more Time spent Traveling and preparation packing up Tec.
    Carly is essential to the meetings. Linda and Carly can be a good Comedy Act together which helps makes the meetings more fun and enjoyable. Linda without Carly is like Ant without Dec.I know you don’t have a Television so you may not have heard of Ant and Dec, ( Ant and Dec are a Comedy Act )
    Maybe lower lighting would be ideal because the gloomy darkness is bad as is to much light for Hypersensitivity to Light.
    Best wishes

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