Thanks-to-everyone-for-coming-along-tonight-to-help-us-celebrate- by sdaferv


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									Thanks to everyone for coming along tonight to help us celebrate the launch of Infertility Network Scotland, the first branch of the national charity Infertility Network UK. It is with great pride and personal satisfaction that I stand here tonight. As the first member of staff here in Scotland and as someone who has been involved in patient support in Scotland for many years, I am just delighted that the charity has it’s own identity here We Scots are a patriotic nation anyway, but since devolution even more so I think………. if that is at all possible. The work of the charity in Scotland began many years ago, and at that time the charity was called CHILD. I began as a volunteer in 1993 when I set up the first support group in Ayrshire, then in 1997 took on the paid role of Regional Organiser.


We have helped provide information and support to thousands of infertility sufferers throughout Scotland in that time. Since I have been involved, I have seen massive changes in infertility services, both in NHS provision and in the treatment of infertility. Technology has meant that treatments have improved tremendously, but we all know that the human reproductive system is a complicated old thing, and many patients, probably the majority of them will not achieve their hopes of having that much wanted child. Despite having had many treatments over many years, David and I were one of those couples who remain childless. SLIDE At Infertility Network we recognise the needs of all those who have fertility issues and for those who do face involuntary childlessness we have a network called More to Life.

This network supports people who are facing a life which was not of their choosing, a life that they had never planned. Most of us when in stable relationships, in due course plan to have a family and to live a family life and all that this entails. Certainly for me it was always the life I expected. The life I had with my mother, father and sister. The family unit I came from and expected always to have when I married. Infertility changes your whole life. It changes you forever even if you do go on to have a family. The emotional and psychological effect it has is profound and reaches into every part of your life. It can affect relationships with family and friends……… because often those affected isolate themselves from even those closest to them at times. It is self preservation. It’s easier not to attend family gatherings than to see

everyone around you in family units while you battle with all the negative emotions that infertility brings. That is when both Infertility Network and More to Life can be of the greatest help to people. Just being there to lend an ear can help remove the isolation so often felt. Many great friendships have evolved between people over the phone or in person at local support groups all around the country. That is why our job is so important……. SLIDE Many of us working for the charity have been through the infertility journey and we know that is essential that people can rely on the charity at the time of most need. We always say we provide our services in a way that best suits each individuals needs……..even if it is only holding the arrow that points the way.


Most of you here tonight will know all about the services we provide, which are wide ranging and ever changing to accommodate the changing needs of those we help. The calls we take every day range from people wanting information or just needing someone to talk to………………… to people who are very distressed and don’t know where to turn. Calls from male partners, female partners and even from family members who want to know how to help their loved ones at such an awful time in their lives. We continue to respond to the needs of all those who seek our help in whatever way they need. SLIDE Our fantastic new website provides masses of information for infertility sufferers like factsheets and other resources all to download free of charge


SLIDE We have a new and extremely helpful section called Funding for Fertility where patients can go and find out what NHS fertility treatment are funded by their PCT or Health Board and what the local eligibility criteria is. This is updated on a daily basis as we find out about changes. It is a fantastic tool for patients……………………… but I just hope that one day there will be no need for it. That we will have a fair and equitable infertility service throughout the UK. In the years I have been involved with the charity the most rewarding times are when you know you have helped people and perhaps made the management of their illness that little bit less tough. The part that I have perhaps been most passionate about is the campaigning part. The injustice that the postcode lottery brings to infertility patients has really angered me over the years.


The long waits for treatment and the bad management of waiting lists that mean people languish on those lists while their fertility declines and their chances of success with treatment reduces as time passes them by. The work of most of the staff at I N UK has for so long been to campaign on behalf of those patients while we also try to support them and advise them in their time of need. In 1999, both Clare and I were involved with the EAGISS group and gave evidence on patient issues to them when they were establishing the recommendations for the treatment of those with fertility problems in Scotland. Those recommendations were published in February 2000, but as they were only recommendations and there was no obligation on Health Boards to implement them, progress was slow.


However, over the years there were moves in the right direction by some Health Boards, but even now, almost 10 years after EAGISS recommendations were published, there are still some health boards who do not follow all the recommendations. However, we were certainly luckier than patients in the rest of the UK where even to this day there remain areas where little or no NHS provision exists. In 2004 the NICE guideline was published for England and Wales and the criteria for assisted conception treatment gave the female upper age limit as age 40. This meant Scotland now dragged behind as our upper age limit was age 38. SLIDE Working with The National Infertility Awareness Campaign which I N UK Chairs and has always played an active part in, I continued to campaign for the EAGISS recommendations to be reviewed and for action to ensure that


Health Boards fully implemented the criteria for treatment There have been various concerns NHS provision, but one great concern for us and more importantly for many patients is the length of the waiting lists for treatment in some areas of Scotland. Some patients were faced with waits of up to 3 years in some cases. This kind of wait means that patients can find that by the time they have reached the front of the list, the female age limit means they have missed the boat and they are denied NHS treatment. There will always be people who feel they are being unfairly treated when it comes to accessing NHS treatment, but there is one particular criteria I would like to bring to your attention tonight. The criteria that states that you may not access NHS treatment if you have any child living with you in the home.


In today’s society, one of serial monogamy, this criteria can discriminate against people who have fertility problems. For some - if they happen to fall in love with someone who already has a child by a previous relationship, they cannot access NHS treatment. One example is a father whose wife died in childbirth and who for 4 years brought up his child alone. At that point he met someone and married again and when the couple decided to have a child his new wife found she had fertility problems. That woman was not able to be treated because her husband had a child who lived with them. If her husband had put his child into care and not been the responsible father when his first wife died they would have been treated. What kind of message does that send out. A very bad one in my view


There are many stories like this one, so we would like to see this criteria being changed. Of course we would all agree that childless couples must be treated first and we all know that there is limited funding available in all therapy areas, but there needs to be more scope to look at individual cases and relax this criteria in some instances. It seems like we have campaigned on all these issues forever, but at last we see some light on the horizon I think. Three years ago the DOH in London funded the I N UK to embark on a project to work with PCTs in England to help them share best practice and to work toward full implementation of the NICE guideline. This project has been extremely successful due in no small part to my colleague Clare Lewis Jones who has recently been awarded an MBE for her services to Health. SLIDE

Earlier this year I was delighted when the Scottish Government agreed to fund Infertility Network Scotland to undertake a similar project with Health Boards here. The Minister for Public Health and Sport is joining us later and will no doubt say a few words about that project, but we are really up for this new challenge which Susan and I have begun planning already. We will meet with Health Boards over the coming months and will also be part of a Specialist Advisory Group being set up by The Scottish Government. So there are positive moves afoot to ensure that Scotland’s infertility patients have access to a fair and equitable fertility service wherever they live. SLIDE Hopefully, some day soon, our role will change. We’ll always continue to support and advise, but I really hope we can look back in the not too distant future

and say “remember the days when we had to fight for NHS funded treatments” SLIDE A couple of years ago I reduced my hours with the charity. Partly to help my husband in his business but also to facilitate us winding down from work and being able to spend more time together. More time to indulge our love of holidays and travel. This new project may mean me working more hours for a while, but my big hope for the future is that by the time I retire from work, that we won’t have funding problems or waiting list problems. But don’t get too excited, I am not leaving any time soon…………… you’re all going to have to put up with me for a while longer. Karen Bray who took over the post of Regional Organiser from me two years ago has unfortunately not been at work for some time as she has been ill. I have

been covering Karen’s work for her for the last few months and we are all sorry she can’t be here tonight to celebrate this occasion with us Susan, myself and Karen when she is back to work, are all based in Ayrshire are always around if we can be of help in any way. We have some new literature which is on display in the public gallery outside this room. I N UK patient leaflets, posters etc have all been rebranded for Infertility Network Scotland and so please feel free to help yourselves to supplies. One of us will be visiting all the clinics or posting out these materials in the coming weeks to make sure you all have adequate supplies. This brings me to some news about new patient literature which will soon be available thanks again to funding from the Scottish Government.


Following a project being funded by the DOH in London to provide packs for patients in England leaving clinics after unsuccessful treatment, the Scottish Government have provided the funding to ensure that Scottish patients will also have this valuable resource. The packs will contain information on alternative parenting options, it will have factsheets on stress and on counselling and give information on how counselling can be accessed after patients leave the clinic. Some patients will not choose alternative parenting options and remain childless. So to help them adjust as they leave the clinic after unsuccessful treatment, these packs will also contain information about the services of More to Life………… where they can get advice and support to help them through the days, weeks, months and years ahead


It is important that clinics continue to make patients aware of the services available to them through Infertility Network Scotland and I know that many of you here this evening already send out our leaflets to all new patients. Please all of you, make sure you do this so that people can access all the valuable services we provide. We make it so easy for you. We provide fax back forms so you can order free supplies of the literature anytime you need them or call us anytime. Soon we will be distributing all the new literature not only to clinics but to GPs and to district general hospital where investigations, ovulation induction and IUI clinics are. I’d just like to take this opportunity to thank Merck Serono and Ferring Pharmaceuticals who have provided the funding to make this reception possible


this evening and to thank you all for your support of I N UK over the years. I know that support will continue and will grow now that Scotland has it’s very own branch of the national charity. SLIDE Infertility Network Scotland - Scotland’s own infertility charity – Now I’d like to hand you over now to Clare Lewis-Jones MBE Chief Executive of I N UK SLIDE


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