Hands off our nurses

The nurse recruitment saga continues. We're having difficulties getting nurse applications, mainly because it isn't your standard ward nurse job and as a one client team, we're too small to be seen by most nurses. So whats the obvious thing to do - advertise where most nurses work - hospitals. Oh no you don't says the hospital manager. They're our staff and we're not letting you poach them.

Now what we're talking about here is two part time staff - it's hardly going to close down the hospital if we're successful, and anyway the care package is ultimately funded by the NHS. But it gets better - the hospital trusts (in charge of the hospital) won't talk to the PCT (in charge of community care/nursing). Meanwhile we're two nurses down (half my sons contracted team) and nobody knows (or cares) about us.

I think there's going to be some 'accidentally dropped' leaflets quite close to the hospital noticeboards soon.

Personalisation - targetted cuts

Personalisation is like Care in the Community - it's a great idea until the County Treasurer gets hold of it - and uses it to implement service cuts. Our Local Authority has used the Personalisation RAS (Resource Allocation Model) to impose cost cielings on care packages and taken on cost cutting consultants to target the most expensive care packages (the most needy) for cuts. They get paid a percentage of the cost savings they make - so no conflict of interest with providing a good service there then! Unfortunately the politicians seem to have bought the cosmetics of Personalisation - one in a million has used his Direct Payments to get a dog as a companion, so he doesn't get depressed. The bulk of people with disabilities need more mundane things like a decent wheelchair or enough care/nursing staff. But these tend to cost more than dog licences so they become targets for cost savings. To the client and carer, Personalisation in practice looks more like personalised targetting for service reductions.

PS The RAS is very careful to take out the cost of carer provided services - carers are only seen as valuable when they save the Treasurer money - their service isn't valued at all.

Where are the magic shoes?

We had to make a formal complaint to get any action on my sons shoes. (All gods children got shoes - so maybe he's on the NHS's side after all!) We've been waiting years - but we've just been informed that they are on their way back from Lithuania (?) and we might get a consultation in a couple of days to see if they fit. Why does it need to get to this level before anything happens. We had the same with his seating system, his wheelchair etc. etc. I'm only a serial complainer because I have to be - nobody takes you seriously until you shout.

Care v boxticking

We've just had a meeting with one of the care provider agencies. Got a phone call on Friday telling us that although we'd been operating the service ina particular way for years, because CSCI(Commission for Social Care Inspection) has been replaced by CQC (Care Quality Commission), the service needs re-registering and lo and behold - it doesn't fit the tick box categories so one bit of it could be 'illegal'. To be fair, my son's package is complicated - but so is his disability. We're lucky that our service provider has worked closely with us to develop a very PCP (Person Centred Planning) care package - the trouble is that the commissioning, registration and inspection organisations don't really understand (and often don't care) about real people's needs as they don't fit the 'one size fits all' tickbox exercises they rely on. So next stop - meeting with CQC and others. My son will be there so they can see what they are talking about. I don't want to redesign his service to fit the inspection regime but that's the way we're being pushed - please don't get me started on 'Personalisation' - I'll do a rant on that later.

Just to illustrate the complexity - we have a 'shared care arrangement' with one provider doing day care, another doing his residential (he's a one person nursing home in a 4 person registered care home -he has 24/7 nurses when not with us), and we provide the rest (some of the care time and lots of other stuff e.g. equipment, drug oversight, care protocol negotiation etc.) His complex care needs include feeding regime (gastrostomy protocols), medication organisation, protocols, interventions, MAR (don't know what MAR stands for! - administering drugs) sheets, regular and PRN (latin for as needed) drugs, motorised wheelchair, very techy seating system, specialist physio, epilepsy and asthma guidelines, end of life care plan, communications passport (non verbal), traffic light sheets (for hospital admission), occasional oxygen, his own wheelchair adapted vehicle, special footwear etc. etc. Despite this he lives in the community and enjoys life.

Where are all the nurses?

We have a small nursing team - great people, just not enough of them. Of the four contracted posts one gave up work and another was injured, now another is going on holiday. They are entitled to change jobs, have holidays and have accidents and I don;t begrudge them at all. But can we get replacements? We can't even get applications for the jobs. It isn't standard nursing but it is rewarding but it's almost impossible to get visible to nurses looking for work when the local hospitals etc. won't allow you to use their noticeboards or networks to advertise - they're afraid we'll poach their staff! It's the NHS that's paying anyway. Anybody out there looking for work?

Shoes and nursing

So, my son needs new shoes. But he needs special ones, we've been trying to get them made for at least two years now. He has three pairs - sandals, not ideal in winter, one pair that damage his toes so he doesn't use them and one pair that are two inches too long. So he has to wear them or his slippers. His new ones have been measured three times and arrived wrong each time, the current attempt is being made for the NHS (National Health Service) in Lithuania and won't be back in Sheffield (why Sheffield it's 80 miles away?) for another 2 weeks. Maybe they'll fit this time?

He has a care package but we've just been told the registration doesn't allow the nurses to work at our house - so major meeting next week to iron out what to do. He comes home if he's ill to keep him out of hospital - so just when he needs nurses, he can't have them. Oh, and if he comes home that also means we have to do the waking nights as well as days - he has fits and needs his airways cleared at night as well as during the day. So much for sleep next month.

So what's your problem?

There's my son - he's 27, has chronic epilepsy, sever asthma, is fed by gastrostomy (a tube directly through his belly to his stomache), can't speak or use his muscles much (apart from to fit), needs airway suction to keep from choking on his secretions etc. etc.
There's me - 61, took early retirement because I was fed up working and it meant I could help with my son.
My wife - the real brains of the outfit, who's forgotten more about my sons care than I or the nurses have learned.
My daughter - who has a life of her own and that's how we want it no matter how much she wants to do.
There are the x2 care provider organisations, both charities, who these days look after my son much of the time - though we still do many shifts and are obviously the emergency backup.
There are Social Services and the PCT (Primary Care Trust - the local health authority) who fund (reluctantly) his care. And a host of service agencies for wheelchair, equipment, consultants etc. etc.

Carer with attitude

So, I'm starting this blog to get things off my chest. Whether I like it or not, I'm a carer - but unlike the picture you may have, I'm not a silent, saintly individual who looks after someone less fortunate than themselves. I'm a real person, with a life of my own who happens to have a son who is PMLD (you'll get used to the acronyms - I had to, but at least I'll explain them when I use them). PMLD stands for Profound and Multiple Learning Disability. My son is also a real person with a life of his own and although he's in a wheelchair, can't speak etc. etc. he isn't a thing to be pitied - he likes trampolining, zip wiring and blondes, not necessarily in that order. I have a wife and daughter who are also real and have lives. We are carers and that does take up most of our lives, but it isn't who we are, it's what we do. This blog will try to give a day to day feel for what our life is like.