Nine Long Weeks!!

Today my husband and I have been at the hospital with our eldest son James along with two of his care staff from his supported accommodation. He travels with his entourage these days!!

It’s our fifth visit to hospital in nine weeks. The first was on 6th August after he had a fall when out in the community with his day services (I wrote about this previously). The outcome of his fall was that James had a fractured patella.

Our last appointment was 3 weeks ago when it was decided that the plaster cast he’d had on for 5 weeks at that point, needed to stay on for another few weeks. Today thankfully it has come off.

James is 28 years old and has Wolf Hirschhorn Syndrome, Autism and a severe learning disability. An injury like this would be significant for anyone, in James’ case it has had many ramifications.

James lives in an upstairs flat in an HMO. For the first few days after his accident, the only way he could leave his flat was for his dad to carry him up and downstairs. This was obviously far from ideal and not really safe for either James or his dad. His staff, following health and safety guidelines were understandably not allowed to do this.

We purchased an evacuation chair.

This has been an absolute life saver. I’m not going to say it’s been easy, and thankfully James only weighs 43kg but it has provided a safe way to transport him up and down stairs and his staff are allowed to use this. What surprised me was how accepting of the new chair James was as he is often not so with new things.

James normally has 1-1 staff 24 hrs a day. He is fully ambulant and tends to follow whoever is caring for him around so if they are in his kitchen area preparing his meal, he will often be there too. If his carer were to go into his bedroom, he would follow them in there, he loves to be with people and watch what’s going on.

For the last nine weeks he has needed 2-1 staffing.

This comes at a considerable cost and has required a lot of justification to the commissioners responsible for supplying the funds as to why this is necessary.

James does not have the capacity to understand the consequences if he were to try and walk on his leg and we were told that he mustn’t do so. He has needed someone to be by his side the whole time to prevent him from doing this and potentially causing himself further long-term injury. Also, he has needed two staff to support him for all of his personal care, he is doubly incontinent and requiring frequent changes. Staff have also been required to not only give him his usual medications but to administer lots of pain relief, all of this means leaving James’ side and so the 2-1 staff has been essential.

James has been unable to attend his regular day services.

He usually has a very busy and active week. As a consequence of his injury, he has been spending a far greater amount of time at home. He loves to sit and do puzzles, look at books and play on his iPad but he likes to do these activities with someone, he cannot do them alone. The additional staffing has meant that he has had lots of different people to interact with. Lots of new staff have been drafted in to support and because of this level of stimulation I feel that his mental health has not suffered.

My husband and I have been going over to his flat on lots of extra days to take him out too. We had to cancel a few days away with my family and also a holiday we had booked. There was no way we could go away and leave James in these circumstances.

We’ve had to make lots of adaptions to the way James does things and he has coped amazingly. He normally loves a bath and has one twice a day but hasn’t been able to as he wouldn’t keep a cover on his plaster so he has had to have bed baths instead. He has been very amused by laying on his sofa with his head over the arm rest so his staff are able to wash his hair over a bowl, we don’t know why he finds this so funny but thankfully he has.

The complexities of this situation have been far reaching and we are not out of the woods yet. I’m very anxious now the plaster is off that he doesn’t overdo it, he doesn’t understand that he needs to do things gradually and that there are some restrictions on what he can do. We still have a bit of a road ahead of us yet.