The JLF Aims from Lessons Learnt

Raise awareness of congenital heart disease (CHD)

Prior to having children, I didn’t know anything about CHD, and didn’t acknowledge or digest information about it, as it wasn’t relevant to me.  I also didn’t know anyone within my circles or family that had had a cardiac child.  No-one ever thinks they are going to have a sick child and coming from a family of 4 healthy children I just didn’t think it would happen to me.  Sadly, this naïve thought left me in a world that crashed down around me.  I was so unprepared, uninformed, ill-equipped, isolated, and broken.

CHD is one of the most common types of birth defect, affecting up to 8 in every 1,000 babies born in the UK and a major cause of deaths in the UK and worldwide.

The JLF wants to raise more awareness of CHD – the diagnoses, the treatments, the specialised units, the support, and the trusted information resources.

Education within local hospitals

As a heart mummy and having had thousands of conversations with fellow heart families, whether they are from The Royal Brompton, forums I have joined for specific heart conditions, or families I have met from all over the UK via other platforms, most have the same fear – having to attend our local hospitals.  There are some local hospitals that are excellent and provide exceptional care to cardiac children.  However, access to excellent local hospitals needs to be available for all and the care provided needs to be consistent across the board.

Having a cardiac baby with a complex heart condition most of us end up staying at a specialised unit while their child undergoes surgery, or multiple surgeries, and for the duration of their recovery.  During this period, you become engrossed in the care and institutionalised to the hospital being your home.  You watch the clinical teams provide care to your child – often asking countless questions, you get involved in your child’s care – many discussions are had with you and your clinical leads, and you talk about your child’s condition for much of your day, every day.  As a result, you do become one of the experts in your child’s condition.

As a mother, you have a natural motherly instinct where your child is concerned.  You know if something isn’t okay, you feel it in your gut.  Add this instinct in with being a heart mummy – you really do KNOW every detail, the ins, and outs of your child.  A heart mummy/parent will be able to tell you their child’s normal respiratory range, their normal oxygen levels, their normal breathing patterns, whether they are recessing or slightly blue, the details of their specific condition, the medications they are on – the amount, what they are for and the times they are administered, and if anything is wrong, even the smallest signs, and what potentially to do.

Many specialised hospitals spend a lot of time preparing you for home.  At The Royal Brompton Hospital, we received:

• Paediatric life support training (which I think should be standard for all parents), and
• Allocated a Clinical Nurse Specialist (CNS) who became our first point of call,
  • Our CNS also put together a folder that detailed Joshua’s unique information about his specific condition, as well as what to do in an emergency and a list of phone numbers that should be called by the clinical team if we ever found ourselves in our local A&E.
  • Our CNS also liaised with our local hospital to make them aware of Joshua and his condition.

Some local hospitals have a great system that enables a flag to be put against the child and information to be documented – but many don’t.  Some also have a fast-track card which allows you to be seen immediately when attending A&E in an emergency – but many don’t.

Sadly, with all that was implemented for Joshua, and many children/families I know, a local hospital is still a terrifying and stressful thought, place, and experience.

Many local hospitals are just not equipped to deal with paediatric cardiac patients.  They do not have the expertise, the training, or the knowledge of how or what to do when faced with an emergency cardiac child.

Sadly, when attending a local hospital, as a parent, I was ignored.  The folder (which I carried around like my life depended on it), got tossed aside.  My begs for them to call the numbers, which are printed largely in the front of the folder, got dismissed.  Relaying information about my child’s condition, fell on deaf ears.  This has been the experience of so many others too.  You really do become so helpless, angry, and frustrated.

The Joshua Lynagh Foundation wants to bridge these gaps.  We want to help improve this, removing incidents of unnecessary loss, better parent-hospital staff relationships, access to consistent care to all, and provide training and expertise to clinical staff to aid local hospitals when having to deal with paediatric cardiac patients.

Clinical knowledge/training

The JLF’s aim is to bridge gaps.  We aim to work with local hospitals to better equip them with training, tools, and resources to provide improved care for paediatric cardiac patients.

Within this programme we aim to educate medics to better support and communicate with parents of CHD children (speak their language), building better patient-clinical relationships by more informed understanding of a parent’s role and their knowledge they build while having a sick child.   This is to ensure that parents are listened to, trusted in and have a greater joint decision of care.

The JLF will provide online tools, training videos, resources, and face-to-face sessions for clinical professionals.

Our ultimate goal for The JLF is to become a hub for clinical professionals as reference and training.

A platform

The JLF is working towards building a platform of trusted and well-informed information for patients.  When hearing your child has a cardiac condition you can’t help but look online to try and understand and process the news.  There is an enormous amount of information online, some relevant, some not and some just scary.  We aim to build a platform that condenses accurate, relevant, and trusted information into one place.

We aim to provide information and support to parents of CHD children, so they do not feel lonely, isolated, and unheard – Providing CHD guidance from experts and information resources for both medics and parents from pre-birth to post-birth wellness.

Support for families following diagnosis

The JLF would like to work with professional bodies to provide improved psychological and practical support to families.

As a family member of a cardiac child, you get so consumed with their care, that you tend to ignore yourself and how you are processing what you are witnessing your child go through.  Once you leave hospital and take a breath, it hits you.  The JLF would like to ensure support is there.

We also aim to bridge the gaps within community support in terms of therapies, and support services for the child.  Whilst also raising awareness of some strains that may be experienced once home albeit financially and practically and suggestions of where to potentially get help.

A network for families

We would like to enable a network for families to share their stories, experiences, thoughts and ask questions.

Fundraising Projects

The JLF will be fundraising for various projects, such as equipment, whilst building our platforms, education, and awareness.