Being nurses couldn’t prepare us for being told our son Elijah had myotubular myopathy and was expected to live only a few weeks. We tried for five years for a baby before Elijah was conceived but when he was born he wasn’t breathing, was very floppy and had to be helped to breathe by passing a tube down his throat. We were told he would only survive a few weeks by doctors, and were advised against giving him a tracheostomy to help him breathe as his life expectancy was so short. My husband Jaroume and I fought for him and at three months Elijah underwent a tracheostomy.
Elijah stayed in hospital for a number of months but thanks to the support of Richard House Children’s Hospice we were able to make the transition home. No child should go straight home with those needs as parents have to learn so much about how to look after their child. Only when we went to Richard House we realised how much we needed and how we wouldn’t be able to do this on our own because of the level of care Elijah needs.
Hitting crisis point
Elijah’s complex needs means he has to have someone caring for him at all times. His condition is very rare so carers often don’t have the expert skills to care for him. We went through a really bad phase in 2012 and so had involvement from social services. It was a really stressful situation and my husband became depressed. We had to ask the CCG to increase the hours as we were struggling to cope with caring for him and working. It was following this crisis point that we got some support over the weekend too.
Still struggling to get the care they need
The care package we receive now is good on paper; after fighting for it we’ve got seven nights and five days so the hours are good but there just aren’t the right people with the right skills to care for him. We often don’t get the hours of care we are supposed to and cannot rely on this care. This situation has got significantly worse over the last two years – the carers are not skilled enough and we end up doing most of the jobs ourselves which is very difficult as we both work shift patterns as nurses.
Because of the lack of skilled carers we have recently shifted to Personal Health Budget and we are now using agency to provide us with carers but there are still not enough staff to cover the whole week, so there’s still gap if there is sickness amongst carers. We just don’t have the time to look for people to care for Elijah on top of working and caring for him ourselves.
Impact on family life
You’re like a machine, going on and on and never having time to shut down or rest. There are no holidays or breaks and we don’t have time to exercise and be healthy. We’re supposed to enjoy the time we have with Elijah, and we do try and do this, but it’s difficult to find the strength to chase the care that we are supposed to get.
Having family holiday is difficult as this requires more planning and budget. We have to find our own carers and pay for them if we want to go on holiday as family. Out of six years, we’ve only had one family break, which was organised by our friends.
We don’t really get any emotional support. Our work has a counselling service but as a nurse I find it strange the thought of accessing this – I’m the one that’s supposed to be giving the care, it’s difficult being the one to receive the care and hard having to explain the situation to yet another new person when we have to do this over and over as it is.
The system needs to be more connected so you don’t have to repeat yourself. All the different departments need to communicate as a team and all access the same information. We shouldn’t have to fill in forms again and again – this should be shared as it’s all in the medical notes.
We still have to fight for everything, have to explain and justify everything. As nurses we know a bit about the system and it’s still been this difficult, so imagine how much more difficult it might be for a family that is unable to articulate their needs. Nothing will change our situation but the right amount of hours and the right skilled workers would definitely help to ease the stress for families like ours.
Onessa and Jaroume Cariazo and their son Elijah are supported by Richard House Children’s Hospice.