My name is Jill and I’m mum to Noah who is 8 years old. He was born with a rare type of interstitial lung disease and following lots of investigations, Noah had a tracheostomy and was put on a 24/7 ventilator with oxygen. He is now only on the ventilator when he is asleep or is poorly which is good. Noah is also now under investigation with the euro team and a clinical geneticist, as they think Noah has further gene abnormalities and some brain damage. I also have another son Oscar who is 6 and is well.

I’ve broken down a few key areas to illustrate some main points:

Diagnosis – children like Noah often have a lot going on, they don’t fit into a ‘box’ and so no one really knows what to suggest – everything is trial and error. There are always further investigations and always other theories which sometimes are investigated and you build your hopes up for an answer, and often there isn’t one. This is really draining and exhausting to think that you’re getting somewhere and actually you’re back to square one.

I am a member of a couple of forums for parents of children with life limiting illnesses and a really common theme is that parents don’t truly feel understood by the general population. The only people that can truly know the horror of life in hospital where literally life is on the line and the medical traumas that we endure at home are people that have lived it – other people who have similar complicated children. Even other family members are often not told what is happening or that there are hospital appointments because everyone wants to say the right thing but there is no right thing to say, and then they try to understand and say something relevant but it ends up being something like ‘ have you ever thought that it might be to do with Hayfever’ and obviously it’s not, but I suppose they don’t know what else to talk about – so it’s better left unsaid.. which actually leads you into feeling more isolated.

Carers – We have a big care package for Noah. Every night overnight and during the daytime at school. I need these carers. I hate having people in the house, those that I wouldn’t choose as my friends ordinarily. I hate having to be fully dressed all the time in my own home because I don’t want carers seeing me with little on. I hate that sometimes I have nothing in common with them and we’ll sit around the kitchen table and actually have nothing to say. Imagine that – when you just want to sit and have your toast but you feel that you need to make conversation but there’s nothing at all to link the two of you. On the other hand carers have a huge impact on the lives of the boys – carers have this job to do but this is our life – a carer leaves and they ask ‘does she not like us any more, when can she come back, why did she leave? It’s such a hard balance. Also many carers find it difficult to include Oscar, my youngest, which leaves him feeling left out and sad. He is always saying that people don’t care about him. Even without carers I have be in the same room as Noah, and Oscar often has to fend for himself – he says it’s not fair – I agree with him – he’s drawn the short straw in many ways.

We’re ruled by time with carers – they always need to finish a shift on time which often cuts our plans short. We have to move mountains to get extra cover if my partner and I want an evening out together. When a shift goes down, I spend most of the day running around contacting people to see what shifts could be rearranged / who is working / free etc. I shouldn’t have to do this, it’s the job of our agency, however I do it quicker as it’s in my best interest to find a solution.

Competencies – they have to be done but Noah hates it – he gets scared when there is someone new practising on him. It’s not nice. Also on competencies days, there’s often 3 medical people around at the same time when I’m trying my best to get the boys ready for their day.

Professionals – some are great, and others are not. I deal with 54 professionals / departments and juggle them all along with running a house and running a company. I know what is happening with every aspect of Noah’s care, whether it be an issue with the EHC at school or the orthotics in his shoes, or that we have to do a sleep study at home. Fifty-four avenues of professionals that are great at their jobs but have no idea what’s going on with each other. This adds time pressure on the MDT / Team around the child, and meetings become less attended which is frustrating. When we were newly out of hospital, everything was very dramatic and unstable with Noah and around twenty people turned up to discuss his treatment and his care – as time has gone on, less and less people attend but Noah is still as sick, still the same diagnosis, still has emergencies.

-Jill, Service User and Carer