Newsletter - Summer 2015

Welcome

Hi everyone and welcome to the "Summer" edition of our newsletter.

We have decided to switch to quarterly newsletters and will e mail you with details of any events/activities in between newsletters or you can always visit our website which contains details of everything we do www.naslandm.co.uk/ 

We will be offering a reduced support service over the summer (24th July - 7th September) because our committee members are all parents of school age children. I'm sure many of you will appreciate how challenging the change of routine can be during the holidays.

We will endeavour to return any calls/emails as soon as we can or you can call the NAS helpline for general advice;

Autism Helpline, Mon-Fri 10am-4pm 0808 800 4104
Parent to parent helpline 0800 800 4106
Online community community.autism.org.uk/ 

Several of our clubs will be running over the summer and you can find details of these and other autism friendly activities in this area on our website www.naslandm.co.uk/events.php 

We have set a date for our first AGM on September 9th and it would be great to get more people on board so please put the date in your diary and come along if you are able.

As always - you can get in touch with us via e mail landm@nas.org.uk, by phone 07500 881 831 or via our facebook group (members only) or facebook page

We wish you all a lovely summer with hopefully lots of sunshine and hope to see you at one of our activities soon

Take care
Gill

Central Lancaster High School

NAS campaigns

NAS Press and Campaigns training

On Monday 13th July staff from the NAS Press and Campaigns team are coming to Lancaster to deliver some training to our committee but also to any members who might be interested in becoming more involved. There will also be members from the Furness and the Blackburn with Darwen NAS branches and it will be good to hear what's happening in other areas near to us. The training will take place in the meeting room at the Storey in Lancaster from 10-2pm and lunch is included. To reserve a place please contact Colette on Colette.hampson@nas.org.uk

Making the UK a more autism friendly place

The NAS are launching their biggest ever campaign in 2016 to improve public understanding of autism. They want this campaign to be based firmly on issues that people with autism and their family/carers/professions believe are the most important. It's crucial that as many people take part as they can so there is a strong evidence base to devise a campaign that will make the biggest possible difference to people's lives.

The survey should take around 15 minutes to complete. If you have any problems or queries completing the survey please email campaign@nas.org.uk

www.surveymonkey.com/r/?sm=vKymRb574SC6CkFSUyTmmMLfW1fjsKpvV6p9CrdrhBE%3d 

Annual General Meeting - 9th September

Information meetings

Firbank Information Meeting

The meeting on Wednesday 1st July at Firbank children's centre, Lancaster (10-12pm) is a parent workshop hosted by Barnardos to answer any questions you have on the Education, Health and Care plans. They will also talk about workshops they can run for children so they can have an input into their plans.

This session is not autism specific so we have opened it up to other parents as well. Please let us know if you wish to attend so we have enough packs for everyone.

There will be no information meeting at Firbank in September as the first Wednesday falls in the school holidays but we will be announcing some informal coffee mornings so please check your e mail or our website for more details.

Guest speakers at our information meetings are always popular but several members have told us that sometimes they just want to come and chat to other parents so this is something we will take on board for the future.

Carnforth Drop In

There will be an informal drop in at Carnforth Childrens centre on Monday 6th July from 09:30-11:30am


Adults with Autism

Setting up a support group - meeting on 14th July
We have received requests from our adult members for their own support group and there is a meeting to discuss some ideas on Tuesday 14th July from 12.30-1.30pm at the meeting room (ground floor) in Lancaster library.
Please come along if you are an adult on the spectrum, going through a diagnosis or are a parent/carer of someone who you think would benefit from such a group. We would also love to hear from you if you are able to help with the running of this group or have any experience of working with adults on the spectrum.

Getting a diagnosis
The Autism act states that each authority must ensure there is a clear pathway for adults who suspect that they are on the autistic spectrum and would like to request a diagnosis.

All GP practices in this area have been informed of the pathway but sadly we are hearing from some of our members that their GP either doesn't understand how to request a diagnosis or isn't following correct procedure. If this has happened to you then please get in touch with Kizzy by e mailing kizzy.f@naslandm.co.uk. She sits on the diagnosis, assessment and support sub-group of Lancashire's Autism partnership board and it's so important that they know which GPs need more information to ensure that the diagnostic process is followed correctly.

What is the procedure for an adult diagnosis?
If you believe that you might be on the autistic spectrum then the first step is to go to your GP and request that they carry out a very short assessment with you which is basically just a few short questions. All GPs should be aware of this test and it might be worthwhile contacting the practice before your appointment to make sure they are aware that this is what you would like so they are prepared and you don't have to go back again. The GP can't refuse to give you this assessment - it is your right under the Autism Act! If you score above a certain amount then this is an indicator that you might be on the spectrum and a further assessment is necessary.
This further assessment will be carried out by a clinical psychologist called Vikki Bliss but before this takes place the GP will need to request funding and they do this by writing a letter to the Clinical Commissioning Group (CCG)

Once the GP has received approval from the CCG you will be placed on Vikki's waiting list. The waiting time is currently around 6 months but the whole process will take longer - depending on how quickly your GP sends off the letters and how long the CCG take to authorise payment. It is possible to get a private assessment with Vikki if you don't wish to apply for, or wait for, CCG funding. We can provide details on request.

Vikki will send you some forms in the post for you to fill in before her meeting with you and, as far as I'm aware, she will tell you at that meeting if you are on the autistic spectrum. You will receive a formal written report a few weeks later.

If you receive a diagnosis then you will be offered five follow up sessions with her to talk through your feelings and to ask any questions you may have. You can take these over an extended period of time as naturally it might take some people time to digest the news - even if it's not a surprise and comes as a relief.

Receiving any diagnosis, no matter what age, can be a confusing and upsetting time and our branch is here to help and support you during this process in whatever way we can. Good luck if you are embarking on this pathway and please remember we are here for you.

PARC Autism resource centre - Open day 6th July 11-3pm

The Autism resource centre in Preston is finally ready to open after some unexpected repairs which were needed to the building, near Moor park.

The centre will offer some exciting training and social activities for people 16+ with a diagnosis of autism.
For more information please contact elizabeth.gordon@nas.org.uk or call 07436 267399

Meeting at Longlands Child Development centre

This month we had another meeting with Fiona Eaton (Consultant Paediatrician at Longlands Child Development Centre) and Laurel White (Community Paediatrics Service Manager) to discuss the diagnostic process for children on the spectrum and the lack of post diagnosis services. Staff from childrens centres and a health visitor were also present.

There are only a few children now waiting for the MAAT panel, many of them patients of Dr Formosa who will shortly be returning from maternity leave. The MAAT team will meet up to discuss these children and Dr Kennedy will once again be part of this panel.

Fiona talked about trying to allocate more speech and language time to ensure that the panel is not waiting on reports before a decision can be made. She also talked about co-ordinating the administration so it comes from a central location which, again, can cause unnecessary delays.

Many of our parents have told us they believe their child also has Pathological Demand Avoidance (PDA). This is now recognised as an autism spectrum condition but there are only a few centres in the country which can diagnose PDA. Fiona said she would discuss this with the psychology team but it's unlikely that anyone in this area would be able to diagnose.

Most of the meeting was concerned with the lack of post diagnosis support, especially education and training for the parents and the children to help them come to terms with the diagnosis. We agreed that we need to put pressure on the Clinical Commissioning Group (CCG) to ensure that recommendations clearly laid out in the NICE guidelines are being met. Unlike the Autism act (which just applies to adults) the NICE guidelines are not a legal obligation but health authorities should strive to meet the needs of children with autism. The following link contains an easy to read summary of the guidelines for those who want to find out more www.specialneedsjungle.com/nice-guidelines-for-treatment-of-autism-in-children-and-young-people-published/ 

One of the biggest problems many of us face is access to mental health services (CAMHS) and there are currently no child psychiatrists in this area to work with our children. The CCG can approve funding for children to access the Psychiatric service from the Preston team, which is a different health authority, but we will continue to ask the question "why haven't we got our own service and specialised CAMHS workers?"

We will be meeting shortly with the CCG and will bring this up, along with the continuing absence of a learning disability nurse. Fiona advised caution using the term "learning disability" because many of our high functioning children also have a high IQ and there is a danger that they won't be able to access this service if the post does eventually get filled. An alternative job title would be ASD practitioner.

Finally, we spoke further about getting schools more involved in the diagnostic process by including school nurses and Sencos eg asking for their input and writing to them directly (with parents permission) when a child receives a diagnosis so they have all the necessary paperwork.

There will be another meeting after the summer break and we shall keep you informed of any progress.

Training

Cedar House school - parental advice sessions

The Headteacher (Kathryn Taylor) and a therapist from Cedar House school in Bentham came to talk to our group at the last information morning. As well as talking about their school they offered some really useful tips and advice for the parents present. They have agreed to come back to advise us on any specific issues or problems we are facing with our children. This could be challenging behaviour (eg trying to identify triggers) or advice on sensory needs or using picture schedules etc.

In advance of this meeting they would like us to send them brief details of these issues/problems so they can send the right people to talk to us and also think of some useful techniques we could try. Please get in touch with our branch if you would be interested in this session.

Cygnets Course

One of our members, Lucy Ellis, is still awaiting funding to start training for the Cygnets course. This is a fantastic course to develop parents' understanding of autism and how it affects their child. There are different sessions to learn more about communication, sensory issues and understanding behaviour. This course is run by the health authority in other areas of Lancashire but sadly not here (!) so Lucy is acquiring funding from the Clinical Commissioning Group (CCG) to train up staff (including the Children's centres) so we are able to run this course continually for our parents.

NAS training - Managing anger and Sensory Needs

We are still working on rolling out these NAS modules for our members but hope to do so in the Autumn term, starting with Managing anger.

The Sensory module is just an introduction to explain more about the different sensory systems and how people on the spectrum have differences in processing this sensory information. We want to run some workshops with Julia Dyer (a sensory integration therapist) along side this module as she can give more practical and individualised advice on specific sensory issues and problems.

Minecraft club

Youth group

We now have a lovely group of children who regularly attend our youth group on Wednesday evenings at the YPS room in Morecambe library 6-8pm. It's lovely to see friendships starting to form and them relaxing in each others' company.

There are some places left but new people will need to book in first before coming down. The group will be running over the summer holidays.

This term the children had a talk from a local photographer and we have planned a yoga session and a master class from a professional baker. We are ending the term with a trip to blue, green, yellow dead at Regent park studios.

Lectures

Thank you to everyone who attended the lecture by Luke Jackson last month. It was a truly uplifting lecture from a very inspirational young man. He is in the middle of writing his next book and we will definitely invite him to talk again once it's been published. It's called "Sex, Drugs and Asperger's Syndrome: A User Guide to Adulthood"

For our next lecture we will be inviting a female speaker to talk about how autism presents itself differently in women and the challenges they face getting a diagnosis and living with autism. We have a couple of exciting speakers to choose from and will announce more details later in the year.