Opening the Door A conference about Personal Development and Information on Services for Young People living with SMA or similar neuromuscular conditions.

This is Mick Kirk's report on "Opening the Door".

•    WHY "OPENING THE DOOR"
  
•    THE RUN-UP
  
•    THE VENUE
  
•    PROCEEDINGS
  
•    SUMMARY
  
•    THANKS AND ACKNOWLEDGEMENTS
  
•    EVALUATION COMMENTS
  
•    ATTENDEES
  

WHY "OPENING THE DOOR"?

The Ethos

The crux of the JTSMA bid to the National Lottery Charities Board was that we needed to fill the gap that exists between young people with SMA, and their access to the information and support they need in order for them to fulfil their aspirations and potential.

In our bid, we specified that the Trust would hold a conference about personal development and information of services for young people living with SMA or similar neuromuscular conditions. My colleague Tim Dowan - who is the Young People's Network Co-ordinator - and I, developed the idea into presenting a national event that would appeal to all in the specified age-group 16-25, who were either affected by SMA, a similar neuromuscular condition or another type of physical impairment.

This event would provide a rare opportunity for our target group to hear from, and have access to, people who would provide practical information on how to set about pursuing personal career and life choices. They would also relay their personal experiences along the way to reaching their own goals in education, career and lifestyle.

The Title

The Planning

The When and The Where

Along with the search for a suitable date, we needed to find the right venue, and entered into a process designed to seek out the most attractive venue for our target group. Some of the questions we asked ourselves were:- Should it be a one day conference or a residential event? Should we hold it in a large city and at a prestigious hotel?

Our favourite option was that we should run a one-day event, with a dinner afterward. This option would not only provide the opportunity for people to talk and share experiences and knowledge informally, it would also give people who had long journeys the option of an overnight stay. We were now looking for a venue that could accommodate between 100 and 150 people in a conference setting, we also estimated that we needed at least 40 bedrooms, most of which had to be wheelchair accessible.

We had a pretty good idea of what OtD was going to be about, and though we had yet to find a venue or a definite date, we released the first piece of publicity in the form of a flier at the 1999 JTSMA Annual Conference.

The North Stand, Old Trafford

I contacted Colette O'Riley at Manchester United Conference and Catering, who told me that it was possible to hold an event there for around 150 people. Unfortunately the only date she had available, and which fell within our parameter was Saturday 1 July 2000. This would be cutting things fine with end of term at some Universities and Colleges, and we considered all the pros and cons for some time before deciding that the opportunity to hold OtD at such a prestigious venue was just too good to miss.

I asked Colette if she knew of any suitable accommodation close by and she suggested we try the Quality Hotel Manchester, which is within easy walking distance of the stadium. I contacted them and was able to reserve 50 rooms.

We made provisional bookings with the Quality Hotel Manchester and with Manchester United for the Trafford Suite, ordering buffet lunch and evening meal for Saturday 1 July 2000. Our booking was subject to both venues being personally checked for suitability, and Graham Baker, a CI who lives in Warrington, kindly agreed to carry this out. Graham reported that the hotel was ideal but the Trafford Suite was not suitable for our needs. Colette had shown him Salford Suites I and II as an alternative, both of which were available, and these were perfect. We changed our booking accordingly and confirmed.

THE RUN-UP

Perhaps the most difficult decision making process was the charging structure, and after much number crunching we settled on the method explained on the accompanying notes to the booking form.
(see old copy on this site)

The winter edition of "Holding Hands" included the booking form for OtD and we waited, fingers crossed, for the response. Early indications were encouraging as a steady trickle of booking forms came in, but as the weeks ticked by and 1 July loomed ever larger on the horizon, it became apparent that the take up would be significantly lower than the 100 or so that we had anticipated. With two months to go and deadlines set to expire at the end of May, Tim and I needed to choose a course of action.

Our sense of disappointment at this time was compounded by the lack of response from almost every professional, government and educational body we invited.

Given that the numbers were so much lower than we had anticipated, Tim and I had to seriously consider cancelling the event, but before making our final decision I visited both venues on 19 May to inform them of the revised numbers and explore our options. Both venues were very understanding and helpful and this strengthened our determination to go ahead with OtD.

The choice we made was to retain the programme and simply alter the room layout from a Conference setting to a 'U' shape with tables. We cancelled the evening meal in Salford I, reduced the buffet from 50 to 30 and booked people into the hotel for Friday instead of Saturday.

Another factor in our decision to continue was that we felt it was very important to keep faith with the people who had booked and who would have been denied what we knew would a valuable experience.

Sadly, just a week before OtD, Tim was taken ill and despite all his best efforts he was unable to make it to Manchester. I know how disappointed he was not to be there, as we had spent much time working closely together during the planning stage. We were ably supported, during the run-up, by Michele Young who unfortunately for us, moved on to pastures new just before the event. Thankfully, colleagues at the office were brilliant in stepping into the breach and provided excellent support, especially Heather, Anita and Mike.

THE VENUE

		The Quality Hotel Manchester is a modern hotel opened in early 1999. It is the official Manchester United hotel and is situated only a few hundred yards from Old Trafford football stadium. There is level access via automatic doors into the lobby. All rooms in the hotel are wheelchair accessible, there are six specially designated rooms, two double and four twin, all with wheel-in shower.

The hotel is attached to the Rhodes & Co, restaurant where residents may breakfast. Evening meals are bookable through the hotel, the food is superb but expensive, and the service is excellent.

The North Stand at Old Trafford has ample car parking immediately adjacent to the main reception area, which has level access via automatic doors. The lifts are situated in the reception area and give access to all floors. The North Stand also houses the Red Café, the Manchester United museum, and is the starting point for the official stadium tour.

Salford Suite II is on the fourth floor of the North Stand at Old Trafford. It is a large room that proved ideal for our needs and size of group. All necessary facilities are located nearby and these include a wheelchair accessible toilet.

I was impressed to learn that there is a lift reserved solely for evacuation of wheelchair users in the event of an emergency.

The lighting in the room is excellent and the acoustics are good, though I would recommend the use of a microphone at all future JTSMA events. Overall it was a very pleasant working space.

Friday 30 June 2000

Kim was first to arrive at around 4pm, and by 9 o'clock everyone who had booked to stay in the hotel had arrived safely.

Most chose to have dinner at Rhodes & Co, though for some the bright lights of the city centre beckoned. We all met for a drink or two in the lobby before retiring, some much later than others - much much later!

Outside Rhodes & Co

Saturday 1 July 2000

The stage was now set for "Opening the Door".

Salford Suite II Set out for OtD

As people dried off and settled in, chatting over coffee, I had a definite feeling that this was going to be a good day, despite the wet start.

Dan Cundall (NMC) left and Mick Kirk (JTSMA)

OPENING THE DOOR,

We started on time at 10.30a.m.I welcomed everyone and introduced our first speaker, Kathryn Thomas from the Pacific Institute, who gave a fifteen-minute introduction to the Institute's work and explained a little about the session she would be facilitating later in the day.

Education & College Life

Toby and Catherine presented an invaluable insight into the practical considerations required once a place at university is secured. Besides the main reason for being at university, education, the issues that need to be addressed as a student with a physical impairment need considerable attention.

Highlighting some key points and guidelines, including how to finance personal assistance, such as the Independent Living Fund and Direct Payments, Catherine and Toby explained the options available, which were many and varied. An important truth that emerged from hearing their experiences is that individual choice boils down to what is right for you, and that some degree of trial and error has to be applied in achieving this choice.

A good resource to tap into at national level is SKILL, whereas locally your careers office, chosen university, student services and library can also prove useful. Types of accommodation were discussed together with issues around accessible housing, e.g. Housing Association as opposed to Student Housing.

Universities may also be willing to consider adapting Halls of Residence.

As if to demonstrate the different approaches that can be applied when choosing a university, Toby told how he looked at factors such as wheelchair friendliness around the university the campus and the town/city. Whereas Catherine, made her choice regardless of access considerations.

On the subject of personal assistance, we heard some illuminating anecdotes, which showed that care agencies range from the very good to the extremely bad.

An advantage of using agencies can be found in their flexibility, and they can provide cover for anything between half an hour to 24 hours. They are also useful as emergency cover and can take care of the administrative side of managing care. Once again it is very much down to personal preference and many people find the best solution is to combine both private and agency care provision.

The overriding message from both Toby and Catherine was to allow lots of time to organise moving to university- and once there, have a great time.

This was an extremely valuable and informative presentation, and anyone with SMA who is contemplating attending university, or anyone who has a son or daughter with SMA, should make a point of speaking to people with first hand experience like Toby and Catherine.

Finding Somewhere to Live

Mark informed us that the aim of the Disability Housing Service is to increase the housing opportunities available to disabled people and their families. The service does this by providing information to disabled people and their families and also to housing, social service and voluntary agency employees on how to advise their clients effectively. It is also part of his job to liaise and discuss with service planners about present and future needs of disabled people, while at the same time assisting disabled people to ensure their full housing needs are met.

Another of Mark's roles is the preparation and delivery of training on disability equality issues for housing providers.

Mark encouraged comments and questions on housing matters. One point that came over very strongly was how housing design can determine our future, even to the extent of the people we meet and develop relationships with. Mark illustrated this by asking everyone to indicate if he, a wheelchair user, would be able to get into their home if invited to dinner, then could he access the lounge, the dining room, a toilet? As people dropped out Mark made the point that his kindred spirit just might be one of those who had a completely inaccessible home and therefore his future had been directly affected by an architects pen.

The main message was that housing should be inclusive and allow easy access for all.

Mark brought some information fact-sheets and contact addresses that will prove extremely helpful when the time comes to look for somewhere suitable to live.

Mark kindly offered to stay over lunch to give people the opportunity to ask questions, even though he had a pressing engagement in Derbyshire for his nephew's 1st birthday party.

After a morning crammed full of valuable information, advice and expert insight into access to education and housing, I again thanked Kathryn, Toby, Catherine and Mark before breaking to enjoy a fine buffet lunch. The deliciousness of which in no way hindered conversation judging by the buzz in the room.

Opening Your Own Doors -- How to make it happen

I introduced Kim, who confessed how nervous she was to be on the other side of the fence, answering the questions as opposed to asking them. I assured her she was no more nervous than I was, a mere novice finding myself interviewing someone who has worked as a regular presenter on seven series of "From the Edge" the BBC's leading magazine programme on disability issues.

Our mutually held fears proved completely unfounded as Kim made my job so easy. It was soon clear that Kim had captivated the audience, as she talked entertainingly about her media career. I asked Kim to tell us about a piece I had seen on "From the Edge", when she went up in a Micro-lite. She recalled it with some horror and revealed that, if having to go up five times wasn't bad enough, she discovered that just before take off on one of the flights, her safety harness wasn't properly fastened!

I then invited Kim to talk about how her decision to leave home had affected her family. Kim recognised that it had not been easy for any of them but stressed that her family had supported her throughout, citing good communication as an essential factor. Kim also said that once the decision was made, it was important that she saw it through, even after a particularly difficult situation developed where she was living at the time that would have made it very easy to return to her parents. She has since moved away from the house in question and is very happy living where she is now.

We then moved on to Kim's experience of pregnancy and motherhood. Kim told how, because of her SMA, health professionals had a tendency to view her pregnancy as more problematical than would usually be the case. She soon realised that she would have to act quickly if things were not to be taken out of her hands completely. So, on top of all the inherent trials and tribulations of pregnancy, Kim had to become a co-ordinator and arranger of meetings with all the agencies concerned. This achieved the desired outcome in the sense that Kim was able to ensure that her choices and requirements with regard to the pregnancy and the baby remained at the centre of the whole process. Even so, right up to giving birth to Jay, Kim was still uncertain about how much help would be available for her to care for her baby once she took him home. This was resolved when Kim was able to organise a comprehensive care package that enabled her to have maximum input in Jay's up bringing.

Five years down the line Kim confidently combines her various roles to great effect. Jay is now in his second year at school and the media career continues to take unexpected and exciting turns as Kim has just made her acting debut in "Blind Ambition", a TV Movie with Robson Green and Imogen Stubbs. She also works freelance as a researcher with BBC Radio Newcastle.

I was so pleased when Kim agreed to come to OtD, because I knew she would inspire and encourage any young person lucky enough to meet her. I also realise how lucky we were to get her, especially after the Micro-liting episode!

The Pacific Institute

Very much participation and discussion led, we all took part in group work identifying how we develop beliefs, thought processes and opinions.

Kathryn facilitated the attendees to explore self-efficacy; the ability we possess as individuals to cause or make happen. She also told us how as we have a first and second nature, we can develop a better second nature and how we can utilise the concept of "self-talk" in a positive way to improve our self-image and how by changing beliefs, performance can be changed.

We also examined our tendency towards either optimism or pessimism.

Although Kathryn's session didn't allow time for individual profiling, many of us were able to guess which we were. The important message here was to realise that negative self-talk can lead to a downward spiral.

Kathryn highlighted the different thought patterns of optimistic thinkers versus pessimistic thinkers and how to use affirmation to promote optimistic thinking and behaviour.

This session was just a small taster of how we can utilise the power of thought to our best effect. The session was thought provoking and interesting and also facilitated another opportunity for us all to mix and interact with each other.

During the conference

SUMMARY

In recognising that independence is a priority issue for young people, OtD proved to be a valuable starting point in that it successfully delivered an effective programme that examined the options realistically and positively.

I have said this many times throughout my association with JTSMA, and make no apology for saying it again, I have always been struck by the quality of the people we have within the membership and organisation as a whole. OtD benefited immensely from this resource and it is vital that this and the momentum generated by OtD are not lost. Those people who missed out this time must have the opportunity to attend similar events in future.

THANKS AND ACKNOWLEDGEMENTS

EVALUATION COMMENTS

The suitability of the venue and accommodation :

The venue and accommodation was brilliant and the staff were very helpful.

Excellent; easy to find, very accessible.

The suitability of the venue and accommodation was excellent, it was in a central location and in a modern city. Thanks for providing the hoist for me.

Excellent; accessible and friendly good location in reach of public transport.

Excellent in all aspects.

The content of the programme :

Very interesting and helpful. I especially enjoyed the lady that talked about your self development. I would like to see her again.

The content of the programme was very good and suited the title.

Where was Diego?

Interesting, informative.

Very informative.Good mix of information and experiences.

Experiences of YPs.

Meeting other people with SMA and the exchange of information.

It was useful learning from people who had been through certain experiences and from those with SMA.

Housing and education services - broad and different care sources.

Meeting other people, learning from other people’s experiences and obtaining information about other topics that were relevant to me.

Employment issues.

Setting up personal assistance.

Up to users!

Housing/accommodation, employment inc. rights, education, self development, health issues, personal assistance i.e. funding and different ways of obtaining it.

Housing and Independent Living.

By using the volunteers who are part of the network and live with SMA.

Liaising within the group via www/telephone/letter etc.

Don't know; we need everyone else to tell us

By continually providing information and networking. Make Opening the Door an annual event at least.

Continue as you are now. Publish some documents written by people with independent lives on various topics to be given to people looking to live independently. Host another Opening the Door event next year; a seed has been planted and it can only grow!

ATTENDEE LIST