Our Journey

Where are we now...
In August 2021 the children’s cardiac services moved from Glenfield Hospital into the new dedicated Children’s Hospital for the East Midlands, on the Leicester Royal Infirmary site. Heart Link supported the move with a sizeable donation of £170,000.

The new Children’s Hospital (Cardiac Services) includes a new 17 bed Children’s Cardiac Ward, a state-of-the-art Cardiac Theatre and Catheter Laboratory. There is also a new Cardiac Paediatric Intensive Care Unit (CPICU). The CPICU is also a state-of-the-art facility that will enable the Doctors and Nurses to care for some of the most poorly children together with all children needing careful monitoring after surgery. In addition, there is also a new child-oriented Outpatient Waiting Area, Outpatients also has an all-new Echocardiogram Room and patient Consultation Rooms.

Heart Links generous donation funded important facilities to help support both patients and their families while staying in the new Cardiac Children’s ward Cardiac Paediatric Intensive Care Unit. These include a waiting area, a parent lounge, a playroom, a quiet room and parent bedrooms.

 

Three of these areas have been named after some of Heart Links most cherished members, who sadly are no longer with us.
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Other newly formed areas include:

The Waiting Area is open and inviting and allows parents to sit and speak with other parents and grab a hot drink.

Parent Bedrooms are vital in giving parents a place to sleep while their child is staying on the Cardiac Ward, giving them a place to rest and recuperate while remaining close at hand.

Although the new “Children’s” facilities at the LRI are excellent, we would like to reassure the older Cardiac Patients that Heart Link will continue to support you at the Adult Congenital Heart Disease (ACHD) Clinic that remains at Glenfield Hospital next to Ward 30.
Heart Link History: Let's start in 1984...

In 1984 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.

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 recognized 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 the U.K.  Today there are still only four 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 its previous site at Glenfield Hospital.  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 took 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 created 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, 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 and 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.

Expenditure 2015 to date

2019 to date
  • Chart Cart Trollies PICU (£17,186)

  • Donation to new EMCHC unit at LRI (£170,000)

  • 10 INR Machines (£2,990)

  • Solus Vein Machine (£1,598)

  • Breast Pumps (£3,418)

  • Drager Light (£4,606)

  • Replacement caravan ramps (£7,000)

  • Research (£2,000)

  • Trollies PICU (£19,346)

  • Items and equipment for PICU/Ward 30 (£36,000+)

2017 to 2018
  • Space lab monitors (£18,978)

  • Integra Head light Camera (£6,088)

  • Research (£15,000)

  • Solus Flow units (£15,000)

  • Fridge PICU

  • Play Equipment

  • Items and equipment for PICU/Ward 30 (£32,000)

  • Medstorm Bed for PICU (£6,650)

  • 22 INR machines (£5,980)

  • Research (£15,000)

  • Items and equipment for PICU/Ward 30 (£30,300)

2015 to 2016
  • Sads Defibrillator

  • Pacemakers

  • Monitor cost (£31,000)

  • Beds for PICU

  • ECMO machines (£83,000+)

  • Coag check machines (£5,980)

  • Ward extension (£32,671)

  • Parents Accommodation (£17,000+)

  • Items and equipment for PICU/Ward 30 (£58,700)

  • Blood Fridge

  • Coagulation machines

  • Interactive TV (£9,500)

  • Monitor for PICU

  • Medical Trollies

  • Four ECHO probes (£55,000+)

  • Pump Monitors for PICU (£7,700)

  • Items and equipment for PICU/Ward 30 (£35,000)

Heart Link has been supporting families in lots of ways. Keep reading to follow our journey from 2000 onwards below.
 

2000 onwards...

In 2000 continuing our commitment to the E.C.M.O procedure we provided 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, 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 now been replaced twice (2004 & 2010) and have been used and appreciated by countless families.

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2002 to 2004 was busy...

 

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 was situated near to the Education Centre and is available for anyone to use as a place of quiet reflection and contemplation.  There was even somewhere to sit if it rained.

2006 onwards...

Our 2006 Appeal provided a 4D Scanner at a cost of £160,000. In 2007 we refurbished the kitchen and bathroom in the Parents Accommodation off Ward 30. 2008 was a year that funded a Transport Monitor & 2 Cerebral Monitors and in 2009 we provided 5 Special Cots for P.I.C.U at a cost of £45,000.

 

In 2010 we replaced the Caravans at Skegness at a cost of £35,000. 

 

2011 saw us providing two specialist Baby Transporters for P.I.C.U. at a combined cost of £100,000.  Also purchased this year were eight monitors for dedicated use on the Children’s ward, costing another £52,000.

 

2012 expenditure included:

  • Breast Pumps (£8,820) a Nasopharyngoscopy (£4,950)

  • A Paediatric Flexible Scope (£7.350) 10 INR Co-ag Machines (£2,990)

  • A Fiberscope (£7,733) 4 Drip Stands (£822) Craven Shelving (£1,281)

  • 4 Trays & Racking (£2,871) a Miele Condenser Drier (£968)

  • 1 Care Tray Trolley (£340) 4 Work Stations for PICU (£ 2,400)

  • 1 Phototherapy Lamp  (£2,589) I Monitor for Out Patients (£18,216)

  • 1 G.E. Monitor Ward 30 (£9,300)

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2013 onwards

Items funded during 2013 have included refurbishing the Parent Accommodation at the Leicester Royal Infirmary. This was a large project costing approx £30,000 (see picture below)

Also during 2013 we updated the Parent’s kitchen on Ward 30 with a new table & 4 chairs and an American style fridge/freezer.

Amongst the smaller items we bought were 6 low flow air/oxygen units, 10 more Coagu -check machines for use by patients, a Miele dryer, miscellaneous equipment for PICU, a Milton sterilizer, a microwave and kettle for the parent’s kitchen, another trolley for PICU as well as copius amounts of sheeting!

 

All 24 mattresses in the Parent rooms were also replaced (£5,270). Larger items funded in 2013 included: 5 x Smiths Medical Respiration Machines at over £3,000, and a Blanketol cooling system for PICU costing £9,650. Also purchased for PICU costing £33,000 were 2 Maquet Ventilators the cost of which was met by the Dixon-Woods School of Dance from their many years of fundraising & support for Heart Link.

2014 got off to a flying start...​

2014 got off to a flying start as we agreed to fund a research project at Glenfield Hospital by consultant children's heart surgeon Attilio Lotto and Professor Gavin Murphy, British Heart Foundation professor of cardiac surgery at the University of Leicester and a consultant cardiac surgeon at Leicester hospitals at a cost of £25,000.  The aim of the study is to learn more about the effect of kidney inflammation in patients who have had heart surgery.

Mr Lotto & Professor Murphy want to look at the relationship between kidney damage and children with heart failure.

 

At the request of Dr Taliotis, Heart Link have agreed to provide the hospital with a portable vascular ultrasound Sonosite machine at a cost of £19,000 for the Catheter Laboratory.  And also, so far in 2014, we have agreed funding for a special ‘weighing’ bed for PICU costing £11,000.

Our Families Need Your Support Today!