Monthly Archives: May 2011

When will they learn


This is an elderly care ward at our local hospital. Most of the staff there are local people and there are strong links with the local community. There is a strong community involvement with many local people volunteering to and and visit isolated patients. Feel dirty saying this but this is “the big society” in action but rather than keep it open it’s closing and our older people will be placed in wards across Leeds where it’s going to be difficult for husbands, wives and other family members to visit.

Today there has been a lot of talk about how appalling care of elderly patients is in our hospitals and I can’t help but the lack of that personal touch is what is causing the problem. Working in a big hospital you don’t have a shared identity with a patient and that makes it very difficult for you to form a relationship with them. Here you can have a chat with a patient about how the town has changed, where they used to work etc and you’ll always find something you’ve got in common.



My ideal care system


As someone who has used care agencies, my biggest frustration was that I never knew from one day to the next who was going to show up. As a carer my biggest frustration was that I never knew where I was going to be working from one day to the next. The reason for this was always staffing problems.

So why is it so difficult to recruit and retain care workers?

1) The pay is crap. Here you are in a position of responsibility and yet you’re paid little more than minimum wage. You’d be better paid as a cleaner.

2) You are treated like wonder woman, expected to get from one side a town to another which means you are invatiably late for calls and of course you are front line when somone is unable whilst the managers sit in their nice offices ignoring the calls;

3)  Mandatory checks and training are a real hassle;

4) You are with the client day in day out and no one ever asks for your opinion;

5) you end up working overtime as the agency takes on more and more work without successfully taking on any more carers.

Now I could probably add to this list but that’s a good start. Another thing i’ve discovered is just how difficult it is to get into carework. The work is there and in many areas there are horrific shortages. There are agencies recruiting constantly BUT with the cost of mandatory training and CRB checks it’s very difficult for the unemployed to get work in the sector.

I have a solution to this – run a professional registration scheme like OFSTED, provide funding for local authorities to run training courses and provide free CRB checks for people becoming care workers. I know so many people who are put off when they find out that they are going to have to pay in advance for a CRB check with no guarantee of a job at the end of it. It’d also prevent the madness of having to get a different CRB check for multiple agencies – even if you’re working for the same local authority!

I hate how social workers will come in an make a decision having met someone once. I think we need to make better use of senior care staff and create a role where someone independent goes and works with a family for a week and produces a report for social workers to use. That person could also support families to make small changes and care could be better tailored to their needs.

This is just my view but even if people don’t agree with my ideas I think we can be sure of one thing, things need to change because the system isn’t working for anyone.

Gosh, what an exciting blog!


Today I bought a bike! A proper one – it’s got a bell and pedals and gears and not a motor in sight. Sick of sitting in traffic jams all the time spending money we don’t have on diesel. I am however now laid up in bed feeling the effects but i’m sure i’ll get there.

From very early on I realised that cycling hurt less and seemed to take up much less energy than walking but having kids made cycling a big challenge. Now in desperation i’ve purchased a bike, child seat and a trailer and I hope I can manage it – even just doing the school run on the bike would be great. Hopefully the trailer will come quickly so we can get going.

I’ve got an interview on Friday for a company who want me to do some temporary work in learning disability and mental health care homes in Bradford. Got the list of stuff for CRB checks, medical checks, right to work in the UK checks and driving licence checks and it’s an epic list of stuff to find – oh and don’t forget the £44 for the CRB check. Ug! I’ll come up with the goods though because I really want to work.

That’s your’ lot for today folks.


A bit of poetry


Wrote this last week when we watched wooton basset – the town that remembers. Hope you like it as i’ve not written anything for a long time!

A single bell tolls

Over and over again

A single rose is placed

Over and Over again

A single person is mourned

Over and over again

A single heart

Showing love to a single person

Over and over again

A single gesture

Gives so much comfort

Over and over again

And when the bells fall silent

And the roses die away

We will remember them

Over and Over again

Another day at home with the twins, another day to think


I’d like to say something exciting about today but nothing really happened. An agency emailed me back about the CV I sent them yesterday and they’re sending out an application form. It’s for direct payment work in the community so in theory i’ll be able to choose my own hours and choose clients which appeal to me so I could end up with a good range of work which would be fab.

Today i’ve spent a lot of time looking at the different types of care roles, working out the kind of things I can do and there are more things I can do than those I can’t. Realised that one of the big charities i’d applied to is a double tick employer so as someone with a disability I should almost certainly get an interview, they’ve got 33 jobs advertised and are not asking for any experience which given that I have plenty should stand me in good stead.

I got to thinking about the jobs I’d had and what I liked about caring and I realised it was very simple. Being a carer I could always be myself which in school and my work like prior to that I could never do. Working in the daycare centre as a volunteer I loved to sit down on a lunchtime with the clients and share a meal – even if it meant cutting stuff up for someone or helping someone else choose something to eat. To me it wasn’t work, it came naturally. I love nothing more than solving problems and the biggest satisfaction for me used to come when a simple idea like using flashcards to enable a stroke victim to ask for a drink or to go to the toilet, paid off and they went from being angry and frustrated to someone focused on recovery. I loved it when I got to work and there’d be a message for me to go and see a client to discover that they wanted to share the news of a birth of a great grandchild or to show me a response to a letter i’d helped them to write.

I’m not saying care work is a bed of roses. Often a shortage of staff means that you are working long hours and don’t get time to provide people with the social support they need. It’s simply a case of chuck them on a commode and throw them in bed because you’ve got 29 other people to put to bed and only 2 of you to do it. Other times you’ve got people in totally the wrong setting, for example people who have mental health problems or who need nursing care and the medical staff who are meant to be supporting you simply don’t.

Things are improving but with government cuts it is a huge worry to me. I’m a disabled person so the cuts affect me personally. My motability car which enables me to take my daughter to school without help and which means I can work is at risk and that is very very scarey. I’m also a carer and I worry for people who are currently receiving support services to access community services. We shut down daycare centres saying people should access things in the community, we took away people’s community and placed a whole new burden on often elderly parents. Now i’m not saying the closures were a bad thing – often it was just a case of containment and although staff would do their best to provide education there was widespread agreement that it wouldn’t really make much difference in a lot of cases. Trouble is that if you then take away the person who takes our client to the cinema and to their voluntary job then you are isolating people and taking them back to the 1920s when there was no provision at all for people with learning difficulties and they faced life in hospitals or being cared for by their families.

To work or not to work


They don’t make it easy. I decided to come off incapacity benefit because mentally I couldn’t bare the thought of the medical. I’ve been lucky, i’ve never had one but the thought of someone questioning me about a condition which some days I doubt I have and others renders me bed bound, a condition which is doubted by so many, totally terrifies me.

So tonight we’re on the emergency credit for the electric and we’re out of gas. The tank on the car is empty and the bills keep coming in and I feel like i’ve got no choice but to find a job. Trouble is where do I stand as a care worker who can’t care for themself?

Clearly my personal experience of benefits, social workers, care agencies and direct payments could be useful. My experience of caring for my grandmother, deaf father and visually impaired husband counts for something but how can I realistically care for someone else when a lot of the time I can’t care for myself.

So the question is do I go back to work and risk making myself sick or do I put up with the humilation of the ATOS medical. I appreciate I have a choice – be too sick to care for my kids and work or be broke and stay at home or worse put up with the atos humiliation. Worse of all if I go back to work will they see me as being too fit for the DLA that pays for the car and childcare that enables me to even consider working?

I’ve applied for some support worker jobs. I know that I can sit on a stool and support someone to make a meal, I know that I can drive them to the cinema and talk them through how to buy a ticket. I know that I can advocate on someones behalf and most importantly I know I can come up with the most incredibly creative solutions to a problem because lets face it, as a disabled parent I do it every single day but will they write me off, lets wait and see.

Friday 13th


Set up my blog ages ago but have never really got chance to do much with it but it’s here so i’m going to pick up up again!

Today is a bad day. My whole body hurts and what doesn’t hurt is on fire. It’s the kind of day where I could do with childcare, a large dose of amiltryptline and 12 hours sleep. Unfortunately due to the tummy bug the girls have come down with I can’t send them to the childminder so they are at home.

Been to the doctors this morning to sort out a letter to go with my disabled students allowance form and to discuss Cait. Cait’s been under the paediatrician since she was 6 months old when they finally accepted that she and Clara had a dairy intollerence. Trouble is Cait’s continued to suffer from diahrea regularly, has constant wind, sleeps loads, drinks loads and is very small for her age. She was discharged from the paediatrician early in the year but things have gotten worse and worse really.  Asked the GP to speak to the peadtrician and she agreed that it would be worth doing blood tests. So this morning after I spoke to the GP and cleaned up the explosion in her pants we took her to the hospital for blood tests. Just need to wait now and at least the GP has seen what we’re dealing with.

In a way cealiacs would be a nightmare but at least it would explain what was going on. They’ve also checked from immune deficiencies, blood glucose levels and blood count so we will see.