Our ‘Comparing Experiences’ meeting on the 28^th January was very well attended.  We were joined by members of the WHITS-END ADHD Support Group from Lichfield and a party from the Wolverhampton ADHD Group which included their ADHD nurse. 

Our thanks to the two members of staff who attended from Staffordshire Parent Partnership.  They were very helpful.  Hilary Mcfadyen, Skillshare Project Co-ordinator, took ideas from those present with a view to setting up a series of workshops deemed to be most helpful to Parents/Carers.  We decided that a Saturday would be the most suitable day and the focus would be mainly on teens and transition after school.  Another workshop focussing on relaxation and skills for parents to help youngsters relax was also discussed.  Excitingly in addition, we considered these workshops to be a potential launch pad for our parents to go out as emissaries to schools, for example, to educate staff, dinner ladies, governors and teaching assistants about ADHD.

The Wolverhampton Group proposed that we meet up in the summer for a social event and it was felt that a therapy and relaxation day for parents could be organised.   The Cannock Chase Rangers may perhaps be used as child minders – they could take the youngsters for a walk while parents were using a hut for therapy on Cannock Chase premises.  The possibility of using mature students for the therapy/ aromatherapy is being followed up.

We were also delighted to have Sara Heath from fellow ‘Pitch Your Project’ winners Autonomy with us. She gave us a lot of good ideas to follow up.   We talked about The Lighthouse Group and Autonomy joining forces in the future to urge The Chief Executive from the local Trust to address the absence of support for those with ADHD and ASD passing into Adult Services.  Concerns about this issue are already being voiced over in Shropshire.

It was thought that The Lighthouse Group could consider putting in a bid for an ADHD Nurse, as the Wolverhampton Group found theirs to be so helpful but the need to be strongly promoting specialist ADHD clinics across the patch as other areas do was of the essence.

 The meeting also included a raffle and every one who came went away with at least one prize – so it was a win-win for all.

Best Wishes to you all 

A very Happy New Year to everyone and hope you all had a wonderful Christmas. 

Our second Annual General Meeting was held on the 3^rd November and we have now reformed a committee of members with clearly defined roles.  Already we are reaping the benefits of this.  So that committee members can be regularly updated, a ‘telephone tree’ has been set up to facilitate all round communication especially for those who do not have access to email.

We have now managed to have our new volunteer flyers printed.  Picture shows front of leaflet.  These are currently being distributed in a variety of locations likely to attract volunteers.  Plans will be made to encourage and mentor anyone who applies.  We have already had our first helper come forward.  We hope this will be the first of many more. 

Recently an article was published in the ‘letters to editor’ page of a local newsletter which directed a great deal of criticism towards parents of youngsters with ADHD.  The writer implied that ADHD was simply a label which gave parents a medical excuse for their child’s bad behaviour.  The writer also implied that the main cause of the problem was due to bad parenting and suggested that children were being kept under sedation with the controversial drug Ritalin to solve the resulting difficulties.  These sweeping statements were extremely distressing for everyone in the group.  An excellent response from one of our parents was published in a later edition dispelling a lot of these biased opinions and appealing for everyone including teachers to recognise the condition and spend a little more time thinking about ADHD as a real special needs issue in the same way as Dyslexia.  Hopefully this will help to educate the general public about this very misunderstood condition.

Moving on – Lighthouse Group members recently enjoyed an outing to the local ten-pin bowling centre – a great favourite with the youngsters.  Also a trip was arranged to see Aladdin at the Gatehouse Theatre in Stafford on Tuesday 30^th December.  Everyone had a wonderful time and the youngsters were given the opportunity to meet Aladdin backstage after the show.  This make them feel very special and certainly gave them something to boast about to their friends. 

We have more events for the children in the pipeline.

More news on networking – we have recently been in contact with Sara from fellow ‘Pitch Your Project’ winners – Autonomy, also commended at our local Trust’s Celebration Day for Service Users and Carers.  Hopefully, Sara will be joining us at our next meeting 28^th January.  We are looking at the possibility of a joint venture involving other groups and the local Health Trust too – maybe a conference mainly aimed at addressing gaps in awareness/provision for both ADHD and ASD in Staffordshire and Shropshire.

Joanna Francis at local Trust's Celebration Event for Service Users and Carers

Just a quick update to say that as a result of winning Pitch Your Project and in recognition of the work done by the group,  we were honoured to be included in the South Staffordshire and Shropshire Healthcare NHS FoundationTrust’s celebration event for Service Users and Carers on Friday 7th November.   We were delighted when Steve Grange – Director, Business Development for the Trust warmly said that we were welcome to contact him if we wanted any support in the future. 

What a boost!

The Lighthouse Group

 

The smiles on our faces show how honoured and delighted we were to receive our prize.

Now we have the funding, we are raring to move ahead with our plans to develop and provide a better service.  One of our main priorities is to attract the volunteers we desperately need and hope that the leaflet we have designed, (which happily we can now afford to have printed), will be fruitful.

In the meantime we are working on our present agenda.  As well as other topics, one of the purposes of our next meeting is to form a proper committee which will allow participants to share responsibilities, improve the performance of the group and provide a forum for examining issues in greater depth.  

The theme of our last meeting held on Thursday 23^rd October was ‘The educational implications of ADHD and what support is available to parents.’  We were very fortunate to have as our guest speaker a Senior Practitioner Educational Psychologist from the Stafford and South Staffs District Office.  It proved to be a very informative and interactive session.

On 15^th November, we have arranged some fun for the children at the local tenpin bowling centre.  This is an activity that the children have greatly enjoyed in the past.  It will give them the opportunity to meet up again and promises to be a good outing.

A further meeting has been arranged for Tuesday 2nd December.  Again we are fortunate to have a guest speaker, a specialist registrar who will be talking about ‘The medical aspects of ADHD and how doctors can help’. This will be a lunch-time session at our usual meeting place.  Parents will have the opportunity to ask questions and the doctor who is speaking has pledged to research any issues she is unable to answer.

NETWORKING

We are currently working hard with the Wolverhampton ADHD Support Group to strengthen links between our parents in Staffordshire and theirs in the West Midlands and good progress is being made.   We were recently invited to one of their meetings and despite the distance, two of our parents travelled there to attend.  They found it very helpful and came back full of enthusiasm.  The Wolverhampton Group will be joining us in Stafford on 28^th January.  The theme of this session will be comparing experiences.  It will be a getting to know you type of session, discussing topics such as diagnosis pathway, support available, local activities etc.  Hopefully from this we can get ideas of what works best in each area to lobby for improvements in all local patches.   We have also been in contact with a new group that has recently formed in Lichfield and have sent out an invitation to them hoping some of their parents will be able to attend also.

We will keep you updated, so – watch this space!

At the time we won Pitch Your Project, ADHD awareness week was on the horizon.  This was a golden opportunity.  We hoped that our newly acquired status would enable us to shout even louder and strengthen the fight for our cause.  With this in mind, we wrote and sent a press release in to BBC Radio Stoke.  This was then followed up by parent volunteer, Paul Glover with a phone call.  It worked!  Paul was interviewed, a broadcast went out and we all spent the day tuned in to the radio station.

From a parent’s perspective, Paul was able to give a detailed account about ADHD to a massive audience and explain how it had affected his son and his family.  He also talked about the controversial drug – Ritalin – which is often used in the treatment of this condition and was able to speak positively about how it had helped his child.

ADHD can seriously affect a child’s ability to achieve at school and many become excluded.  Following a survey, The National ADHD awareness week campaign was launched by ADDISS, (The National Attention Deficit Disorder Information and Support Service), to call for:

• Better understanding of why ADHD children behave as they do and greater acceptance of their needs
• Improved access to resources and support for children with ADHD and their families
• More focus within the school system to ensure the Government pledge that ‘Every Child Matters’ also applies to ADHD children

Again from personal experience Paul was able to reiterate these points in his very own words making an impassioned plea for the Government to be more supportive and raise awareness that educational needs for children with ADHD should be of equal importance to those with literacy difficulties.

Let’s hope that some of those listeners out there will now have a deeper insight and be able to acknowledge the plight of not only the children affected by ADHD but also their families.

The Lighthouse Group

I was so thrilled when I heard that the group were the winners of the west midlands Pitch Your Project event.  Well done to the three dedicated members who had the courage to face and managed to survive the dreaded Dragons Den.  I know how nervous they were.  Life was hectic for everyone in the run up to the day and has been ever since but despite still reeling from the dizzy heights of success we are already moving forward with our plans to develop the group so that the support provided can be further enhanced.

As the most urgent need is for extra volunteers, to attract them, we have drafted a leaflet which outlines the purpose of the group and lists the kind of assistance we need which includes helping to organise events & activities for the children, preparing and manning display stands (designed to raise awareness about the group and ADHD), and managing our book lending service.  Hopefully, we will be able to have this printed and circulated soon.

I enjoy being a volunteer with the group.  I needed something to keep the old grey matter going and when I heard they needed someone to do their newsletter, I jumped at the chance.  However, my interest and involvement soon evolved beyond the initial attraction – the desktop publishing bit.  I was inspired by the commitment demonstrated by volunteer parents of children with ADHD in the group and their desire to help other families in the same situation as themselves.  I feel privileged to be part of it and am keen to help in any way I can.

I cannot comment from personal experience on what it is like to be the parent of a child with ADHD, but as a retired child health professional, I did come into contact with youngsters affected by the condition and am aware of the difficulties they and their families faced.  Even less was known about ADHD at that time, recognition was very limited and support from experienced parents such as that provided by The Lighthouse Group was none existent.

Hopefully, with the prize money, enthusiastic Ideas and plans the group have come up with to provide a better service, which have often been dashed due to funding issues can now begin to materialise. 

When you get help, you want to put something back.  The Pitch Your Project event which could not only help with advice from seasoned professionals, also offered a route to secure some funding for the group.   So, I was happy to help.

To be honest I was totally unaware of what we were to face.  We shared a 15 mile journey to the venue. Joanna, Ellen and I outlined our thoughts, decided who would start the talk, what our messages for the panel would be and how we could show the passion we felt for our subject.  

We arrived to a friendly welcome and got talking to a chap who had already presented to “The Dragons Den”.  He outlined what his experience had been.   I felt we had nothing to lose!  A roller coaster ride only lasts a few minutes so how bad could 10 minutes in front of the “Dragons” be?

The introductions were over and this was it!   With cameras running, timer set…. “You have 10 minutes to pitch to us, and then we will ask questions.”

I started the talk and could here my own voice tremor!  But then it came good.  By the time Ellen had passionately revealed what it was like for her living with her son’s ADHD and Joanna had given  a professional edge to our pitch, the 10 minutes had flown by.

The panel were very sympathetic and asked searching but pleasant questions and then offered ideas of where we could go for help, what is available and how we should structure ourselves.

Well we had done our best, now it was the next team’s turn.

We were met by further professionals, pointers were given, interview filmed, photos taken – it had been an experience.  I think we were all relieved, but also quite excited that we had been able make our presence felt.  We debriefed in the car back home and then we all fell silent. Now all we could do was wait and see. 

To hear we had won the £2000 for our group is brilliant. We can now start to plan activities without the dreaded “But where will we get the money from to do that?”  

We started holding regular meetings with invited speakers, organising events across the patch, networking, and aiming to raise awareness about ADHD not only among health practitioners, but within schools. 

Out of a competition designed for the youngsters, we chose the name ‘Lighthouse Group’ to represent us.  We just liked the sense of hope and support it engendered.

Over the years, we seemed to be stalling and we wondered how to make the group more vibrant and inviting.  At this point, one of the mothers suggested we try organising more fun events to include the youngsters as well and this proved popular.

Meanwhile, a retired lady started to help us with our regular newsletter.  She was eager to use all her experience in desktop publishing to improve our image, and matters went swimmingly until she started suggesting her son-in-law could help us design our very own website.  We had already produced a leaflet about ADHD and where to get support and this became the core of the website.  There would  also be the option of seeing past copies of the newsletters and a blog page.  We were so delighted when it finally materialised!  Now we can be found on www.lighthousegroup.org.uk

There has always been a core group of loyal parents holding responsibility for keeping the group going, but they felt fairly worn down, on top of the daily problems associated with living with ADHD, with seemingly no acknowledgement from outside bodies of the value of what we were providing.  However, all that changed when we applied for ‘Pitch Your Project!  The panel members listened intently to the experiences of the two parents involved.  They nodded repeatedly when we described what we could offer if we had more volunteers and funding.  They even asked if other parents from outside the area could join us!  This made us feel appreciated and revitalised.  We felt we would get advice and additional support to lift us all to the next level. 

It was a daunting day, but certainly worth the effort.  Since hearing that we won we have gained confidence in our ability to fulfil our aims of becoming an even more supportive group and benefit more families, such as providing a helpline and improving our lending resources of books and games. 

We expect to chart our growth over the next year.  So ……….. ‘Watch this space!’