Heart Link (East Midlands Children's Heart Care Association) Registered Charity No. 513946 was formed in 1981, originally as a support group for parents and families who had a child suffering from a heart defect. Families then, as now, wanted to meet and talk to others in a similar situation. The first meetings were well attended and supported by members of the hospital staff who recognised the need for such a group.
Over the years we have also become increasingly committed to improving facilities for our young patients, their families and providing much needed valuable medical equipment. Our aim has always been to do our best to provide the best.
Since 1981 we have collected, with the marvellous support and generosity of the general public over £2.5 million pounds. This has been used to fund projects large and small.
Our first "big" project was in 1984 when we set to and started our first "Appeal" The money raised was used to build accommodation at Groby Road Hospital enabling parents to stay near their children. This resulted in the P.A.I.R (Parents and Infants Rooms) being annexed to the Children's Ward. The benefit to families was immediate but at that time the long-term implication was not foreseen. This was only recognised when, in 1994, the Children's Unit was transferred to it's present site at Glenfield Hospital. Existing facilities had to be matched to ensure accommodation for parents was provided.
In 1989, Heart Link was approached by Paediatric Surgeon Mr R.K. Firmin to consider funding the setting up of a pioneering technique he had witnessed in the U.S.A. This system, known as E.C.M.O (Extra Corporeal Membrane Oxygenation) is a modern invasive life-support system which can be used on patients with severe respiratory/cardiac failure. He had seen how effective this treatment was but in this country its value was not yet recognised and funding was unavailable through the NHS.
The Heart Link Committee, although not able to understand the technicalities, were convinced enough of it's potential benefits by Mr Firmin, to launch another "Appeal" which resulted in the E.C.M.O programme being introduced to Glenfield Hospital. Heart Link funded this together with all the relevant running costs including paying the staff who worked on it until; after assessing various "trials" (and nearly bankrupting Heart Link) the NHS agreed it was a worthwhile treatment and took over the funding. Today there are still only 4 E.C.M.O centres in the whole country and we are proud to say that Glenfield is able to undertake this treatment on newborn babies, children and adults, if thought appropriate.
In 1994, the Children's Cardiac Unit was transferred to it's present site at Glenfield Hospital. Although newer and more up to date, it lacked something we considered very important for the well being of both young patients and their siblings a play room!. We raised £230,000 to build a purpose built two storey play room with outdoor play area which is accessed directly off the Children's Ward. A lift takes you downstairs to see and play on Thomas the Tank Engine, a great favourite with everyone!
The following year we "enclosed" the ground floor area of the playroom making it usable all year round. This cost £30,000. We now have a large indoor play area for bikes and other larger toys; with double doors which can be opened in fine weather giving access to a fully fenced in extended play area; with grass and pathways.
In 1996, we were asked to provide the money to install a helicopter landing pad at the hospital. This would enable children needing urgent attention particularly those requiring E.C.M.O treatment to be brought in more quickly: greatly enhancing their chances of survival. This project cost £85,000.
In 1997, at the request of paediatric consultant Dr K.C. Chan, we funded a pioneering study costing £20,000 using the "Amplatzer Device" for "hole in the heart" closure through a catheter, thereby eliminating open heart surgery for certain types of defects. This procedure is now used regularly with great success.
Our fundraising projects in 1998/1999 were prompted by the paediatric consultants and surgeons who requested a "state of the art" 3D Imaging Scanner; which would greatly enhance the images used by them when assessing diagnosis. At the same time we were aware that a "Portable Scanner" could be taken out to other hospital Out Patient Departments thereby eliminating the need to bring children who live outside Leicestershire to Glenfield Hospital for their routine appointments.
In 2000 continuing our commitment to the E.C.M.O procedure we provide two "cooling units" costing £8000 each to be used in conjunction with E.C.M.O treatment and also a ventilator of the most advanced type to be used in P.I.C.U costing £36,000
In 2001, (our 20th year) we bought two caravans on the Golden Sands site at Mablethorpe: for use exclusively by families whose child had a heart condition and who might not otherwise benefit from a holiday. We are pleased to report that these have been used and appreciated by countless families.
In 2002, we funded the upgrading of computer software, supplied digital cameras; to both the Ward and P.I.C.U together with suitable printers; papers and discs. We replaced all the beds and cots in P.I.C.U and Ward 30. We also paid for suitable ramps to be installed at both our caravans, to enable easier access.
In 2003, we were asked to consider funding another more improved scanner; costing £104,000; of course we agreed!
In 2004, we funded the "Heart Link Garden". This is a quiet, landscaped area with plenty of seating. It is situated near to the Education Centre and is available for anyone to use as a place of quiet reflection and contemplation. There is even somewhere to sit if it rains. Also at the end of 2004, following several maintenance problems with our existing caravans it was decided to replace them. We have just bought two new 8 berth caravans at Butlins, Skegness at a cost of £40,000. These will be ready for the 2005 season and, we know, will continue to give lots of families holidays they might not otherwise have had. Our "minor" projects are too numerous to mention but suffice to say that we will try to provide anything that we or the nursing staff, feel would be of benefit to our young patients or their families whilst they are in hospital. These range from actual Medical Equipment to Overnight Toiletry bags for Emergency admissions; Toys; Games; Videos; furniture and fittings for the parents rooms; and kitchen; and even all the tea, coffee and sugar used for those endless drinks.
We give a "Heart Link Goody Bag" to every young patient on their first admission to Glenfield Hospital. These include an exclusive "Walter Bear" cuddly toy complete with it's own Heart Link T Shirt, a Heart Link mug; pen; pencil & car sticker. We also enclose a book titled "Heart Children" which we hope families find useful as it explains various heart conditions.
We consider it essential to maintain the support side for parents. We hold weekly "Coffee Evenings" at 8-00pm every Tuesday in the Heart Link Office which is situated in the Play Room, directly off the Children's Ward. This is a chance for anyone to come and join us and talk to committee members, who themselves have a child with a heart defect. Our Chairman also pays a visit on Friday nights, when again the kettle is always on!
Committee members are always available if a parent would like to talk to someone. The Ward staff will contact us at anytime if anyone asks them to.
We operate a 24 hour Freephone Helpline No 0500 382152
We produce a quarterly Newsletter which is circulated to all our members and is also available for anyone else interested in our Charity. We are always pleased to hear from our members and gladly print their stories and letters, as we know other families in similar situations like to read them.
We organise an annual day trip with discounted entry for our family members to places like Twycross Zoo, Wicksteed Park and Twin Lakes Theme Park. This has proved to be a good day out (though we don't always get the weather right!) It is a chance for everyone to socialise and catch up with others they may have met through hospital or out-patient visits.
For our young members we hold an annual Teddy Bears Picnic in August. This has now developed into a major event with fairground rides; Donkey rides; B.B.Q; Ice cream man; face painters; clowns and anything else we can think of to make it a day to remember. The fact that it usually rains is irrelevant to all those who regularly attend!
In December, we hold a very noisy but very enjoyable Christmas party complete with Santa; clowns; face painters; fancy dress competitions; not forgetting a picnic tea and a present for every child (patient and siblings) Over the years as our membership has increased the need to find larger venues has been a priority. We have outgrown social clubs and school halls but for the past few years we have been very well looked after by the staff at "Creation Night Club" in Leicester and hope they will continue to accommodate us for the foreseeable future.
Realising that our "young" patients are perhaps outgrowing picnics and Santa we have been happy to fund various trips and activities aimed at the older (over 12') members who, because of their heart defects, do not always find it easy to join in with their peers. These have included trips to the London Eye; London theatres; Bowling; Laser Quest; Horse Riding and Theme Parks. We are indebted to the members of staff from the Children's Ward who have organised these trips and accompanied them. We hear from the youngsters just how much they have enjoyed and benefited from these opportunities.
As you must have realised by now, we would not be able to do all this without the help and support of our wonderful fundraisers. We have a small, but totally dedicated, team connected to our Committee who regularly "collect" whatever the weather outside supermarkets. They also organise Annual Fundraising events. The main two are: "The Steam & Vintage Rally" held on the fourth weekend in July at Wymeswold, Leicestershire, which raises several thousand pounds for Heart Link and "The Leicester Organ Festival" held in Spring which brings many Organ Grinders from all over the country to raise money on our behalf. We are also indebted to all our other fundraisers, too many to mention, who have over the years (and we hope for years to come) run marathons; scaled mountains; held coffee days; organised discos and balls; been sponsored to do almost anything; sold raffle tickets etc etc, etc …..all with the purpose of raising money. It is hard work but every penny raised is used, in some way, to benefit the children and their families.
All our Officials, Committee Members and helpers give their time freely, without payment or taking any expenses, and our administration costs are minimal.