Chairman's Report 2008

Annual General Meeting - June 2008

Good afternoon and welcome to this the 48th AGM of MS Ireland and 9th since it’s incorporation.

My introduction to the MS Society was by way of a request to help keep the books for the Meath Branch - that was nineteen years ago. My stewardship by way of chairing the Society over the last three years is now in its last moments and this year I report to you for the final time in that capacity. I hope you will permit a little sentimentality before I finish up and a brief overview of the previous two years as well as 2007.

I stand down from the Chair on a high note. I am very pleased to report the amount of progress during 2007, the ground work for which had been put in place in the previous years. While there is no room for complacency, as the services for PWMS provided by the State in this country remain way behind our European counterparts, if we want to use them as a yardstick; we have been catching up and the experienced management team and improved systems in place have begun to bear fruit.

Governance

In a review of management, we started at the top and looked at governance. The benefits of the decisions made by the Board, in that regard, are now being seen. If an organization wishes to prosper it will only do so if it has the right leaders in place to formulate the strategy, monitor management and help to promote the profile of the Society. A balance has to be struck between continuity and new blood. As you are aware a new system of selecting candidates for election was undertaken and I am very glad to report on its success. Constantly striving for the optimum mix, the skills that have been brought to the table are appreciated and have been tapped both inside and outside the boardroom. Management has been able to draw on the all so important recent management experience of these people and their knowledge of strategic thinking has been an invaluable help. Most of those coming forward to serve on the Board come either from within the family of MS or have a particular interest in it. Branch representation is ensured by way of 3 seats, nominated by council. I believe, going forward that this is the best method of ensuring a strong Board which has the necessary skills to lead the Society to attaining the goals it has set itself.

Management

By the beginning of 2007, we had a capable management team in place, headed by Anne Winslow, whose ability and capacity for work meant that much has been achieved since her relatively short time with the Society. Internally, she has implemented reporting systems and improved general communications to affect a more efficient service. She, along with our Services Manager, has being working toward the provision of regular and uniform services.

I would like to mention some of the highs. Getting the Balance Right programme has to be the main achievement. The funding came through from Tesco and was equaled by a grant from the Dormant Accounts Fund, for which credit is due to our Chief Executive and her team. This is the first national service undertaken by the Society so an initiative, needed and welcome. This will take place over two years and the results of the research being undertaken in tandem available some time after that. I would hope that in the years to come that funding for physiotherapy will be provided as a matter of course by the HSE and will be so commonplace as not to be worthy of mention. Indeed, looking again to some of our European neighbours, physiotherapy 3/4 times a week, provided by the State is quite normal.

In comparison to last year, I am able to inform you of a very healthy situation at the Care Centre. The staff does an excellent job; under the guidance of the Clinical Nurse manager and the Care Centre Administrator, this facility provides respite to many in a caring atmosphere. While the provision of respite care around the country has improved, we retain a feeling of ownership when we visit our own place and it is a vital cog in the wheel of MS Ireland.

Tara

The resource centre at Tara Limerick, operational for some time, was officially opened, by the Minister for Defence, Mr Willie O’Dea last October and is fully functional.

The Regions

The Board must salute our regional staff. Under the leadership of the Services Manager, the services offered have become more streamlined and uniform. It is, however, always the human touch that can make the difference and I believe that in this area, we shine. It is not an easy task to serve those with a degenerative disease, but by and large our regional staff remains very good tempered and committed to their work.
 
The Branches

We rely on a large and loyal band of volunteers to provide emotional support, social outings and financial welfare. This is done by way of 41 local branches, which interact through council meetings and communications from the Branch Liaison Officer. Your Board is relying more on the Branches to help it fund the services provided to members, particularly so in such areas as research, to reflect the Society’s increased investment. This is necessary to realise the goals in the strategic plan.

Strategic Planning

The Strategic Plan for the next 5 years was finalized. Summarized versions are available to-day for anyone who has missed out on seeing it. The landmark goals under the Plan include 4 rehabilitative centres, providing a range of services and a specialized therapy centre. It is not anticipated that all these will come on stream within the five years, but certainly one pilot centre should be in place. Your board will to have to raise capital for these developments though the ongoing funding will need to be undertaken by the HSE, with whom the Society will negotiate to provide the basic services required by PWMS. Also included in the Plan is the provision of some community housing for those currently inappropriately housed. An active search is taking place now to identify suitable premises in the Eastern area, where such a project has the support and input from the HSE. Support from the Branches and all PwMS will help make these as well as our other strategic goals a reality.

Fundraising/Finance

Fundraising is a necessary component to all future development, in addition to providing funds for the provision of day to day services. Always under pressure to produce more the fundraising department beavers away on our behalf. MS READaTHON continues to be our major fund raiser. 2007 saw the emergence of MS Ireland as the recipient of funding from a RTE dancing programme, when Kevin Dundon danced his way to providing €16,000.00 for the Care Centre. Our runners for the mini marathon not only run but increase awareness as does the presence of the Bray shop. The autumn raffle, led by the Fundraising Manager was a huge success and has been replicated this year. Our new Walks Manager put on her boots and proved that she could walk as well as organize walks.

Fundraising leads to finances. The Society’s finances are in a healthy position as you can see from the annual accounts. The Finance Department might be less evident to most members, but in fact has huge control over the functions of the Society. A Financial Controller has a large influence on the financial well being of an organization and a strategic attitude is all important.

National Events

June 2007 witnessed 1200 visitors to the R.D.S. to MS Living, our national convention. What a sight it was, the place thronging with wheelchairs, throbbing with excitement and palpable pride in a job well done. This displayed what can be achieved and was a terrific success. The line up of speakers was impressive; they informed us on up to the minute research, treatments etc; and wide array of information was available at the stalls with therapy taster sessions on offer as well. There was a great sense of ownership to the event and that all important feeling of “being one of the majority”. This is an example of a good team effort.

National Awards

Following the convention a Gala Dinner was held at the Berkeley Hotel. A fitting occasion for the presentation of our annual awards, which mark the outstanding input to society or the society of some of our members in various categories, those of PwMS, Carer and Volunteer. It is right that some are selected as representative of their group as it salutes the importance of the input of all.
 
Communications & Advocacy

So often problems occur through of lack of communication and MS Ireland like other organizations has experienced this over the years. We have targeted communications and they have improved. Our principle mediums of communication are the MS News, our website, Enewsletter and information leaflets, all of which have benefited from a dedicated Communications Manager. The Society is increasingly involved with advocacy, undertaken at a personal level by the regional offices but undertaken at a general level by the National Office, issues such as those highlighted in our pre budget submission would come under the topic of advocacy and I am pleased to inform you that MS Ireland is making strides in highlighting the issues affecting those with MS, particularly in the national area, in relation to lack of basic services.

International Links

In 2007, the Society further developed its relationship with EMSP, the European MS Platform and MSIF, the MS International Federation. The latter now has 41 members and is in communication with 35 other countries. The focus of these bodies is research, advocating for services, implementing the European Code of Good Practice and lobbying for the signing up to the UN Declaration for people with Disability. The thrust is always to improve the QoL of PwMS, by whatever means are available. EMSP undertook its MS –ID project, collecting data from all its European members on their members and services in the individual countries. Ireland has little data available but enough evidence exists to show there is a dearth of services for our people here. MS Ireland fully supports both these organisations in their work, has an input when appropriate and benefits hugely from its association with them.

Research

Your Board remains firmly committed to funding both scientific and social research, nationally and internationally. To obtain that funding is the challenge and as you are aware the calls on what funds we have are myriad. Highlighting the importance placed by the Board and the members on research, it figures as one of the key components of our Strategic Plan and a minimum targeted amount of €100,000 is now set annually for research. In 2007, input into research fell far short of this amount.
 
Helpline/Membership

The importance of first contacts with the society cannot be over emphasized. How the receptionist first handles a call can determine whether that person will make a further contact in the future. Those manning the helpline hold key positions, listening, providing support and information; they remain available on a daily basis.
Membership is heading towards 6,000. Under the Strategic Plan we are aiming for a membership of 10,000. Everyone will need to help and if we all produced just one more member each, we would increase our lobbying power enormously.
 
The Board

Your board, comprised of deeply committed members, serves you well. My gratitude extends particularly to my deputy chairman, Oliver Durkin and to those standing down after so many years of loyal service. Those Board members standing down this year and last have served the Society well, long periods of service and during some difficult times. Their input over the years should never be minimized. However, members standing down present an opportunity and one that should always be grasped.

What are my disappointments? I have learnt so much of the services on offer in other European countries, that I have, on occasion, felt saddened to be Irish. Ireland is supposed to be a first world country but when it comes to services for people with MS, it is more akin to a third world country. I have frequently been asked how we as a rich country can treat our disabled as a whole, in the manner that we do. This is not only in relation to the ongoing lack of neurologists and the back up multidisciplinary teams, which situation is improving, but at far too slow a rate – we are still bottom of the European patient to neurologist ratio- but also in relation to such services as physiotherapy and personal assistance. These other lack of services here also serves to reflect on what little regard is paid to those with disabilities. Contact with other countries has highlighted the contrast with them, showing that countries such as Norway, Iceland, France etc all offer state funded rehabilitative therapies a number of times a week. O.T. assessments can be arranged in a matter of days and equipment organized accordingly. The future progression of the disease for that individual estimated and decisions on equipment or type of adapted housing made in the light of those estimates. Independence for the PwMS is paramount. As some of you are all too aware, it can take months to get an appointment for an OT and more months for whatever has been recommended to come on stream. There does not appear to be any forward planning in the process.
Personal assistants are a given in most countries with the acceptance that this is not the job of a family member and that such an assistant helps to keep the PwMS as a functional member of society and gives an improved QoL.

I see our Society as a strong and vibrant organization, which now has the necessary base from which to go forward. A strategic Board, a capable management team with suitable processes and procedures and an ability on the ground to deliver services. Our profile still remains low and the lack of awareness of MS and the Society is still very evident. We must work continually to ensure that MS remains in the mainframe and is not squeezed out by other conditions. The message is that MS is the most serious of the degenerative diseases, which affects a person and their families for their normal lifespan.

I am very excited about the Strategic Plan. It is ambitious, we will all have to work together to make it a reality. The aims are realizable, are definitely worthwhile and the more ambitious will require lots of work and funding. Let’s all work together to make them happen.

As I said, there is no room for complacency. The society will continue to develop its services to augment those from the HSE, where essential services are not provided. Relationships with the HSE are good and it is appreciated that it also is constrained for funds, but we have a duty to our members to listen to their needs, to highlight them and make an effort to see that they are attended to.

There is strength in numbers, let’s get ours up. We need to continue and reinforce our co-ordination of efforts from each strand of the Society. We must ensure best practice on all occasions and when action needs to be taken, locally, nationally or internationally that we take it, always having the best interest of the PwMS as our primary aim.

I have enjoyed enormously serving the Board and the Society. MS Ireland has been a large part of my life for the last 19 years. I have one more year to serve on the Board and then I will be standing down. In accordance with what I believe is best practice, I will not be seeking re-election, but hope that my relationship with the Society can continue in a different role. I thank you all for giving me the opportunity to be of assistance to this worthwhile organization.
 
S.L.W. 21st June, 2008.
Annual General Meeting 21st June 2008