• Facebook Social Icon
  • Twitter Social Icon

© 2016 created by SFNPR.com in the sole copyright of Gtr Mcr Neuro Alliance

" I think we've been quite lucky. We have a great GP and a good care support package. I tend to manage a lot by myself and I think that helps because we don't have lots of people coming in all the time. Being ill and stuck indoors gets on my nerves but at least I'm not in a home. My boyfriend is great and very supportive. I wish I could go back to work but that's a long way off I know. I would say though that I haven't been offered any counselling or mental health help and I could do with someone to talk to."

" I'm a social worker and the changes are just too much. GMDevo was supposed to make things simpler for all of us but it hasn't. What it's done is streamline and cut back things so much that most of us just can't cope. I used to get time to see people but now I can't even make phone calls. I spend most of my day fighting fires and I've had enough. I handed in my notice to a boss I rarely see and a system that cares more about money than people. I can't sit across from another family and tell them they can't have their PAs or their activities because some faceless panel has ignored my recommendations and actually the Care Act. People are becoming more isolated and sick. My elderly clients are dying waiting for help. I've had enough. This isn't the career I've loved for 20 odd years it's a joke. " 

" I'm a doctor working in A&E and I despair with the sheer numbers of people we're having to see. Some are very vulnerable and shouldn't really be in the ED at all. I know that some repeaters come for company and human contact which makes me realise that my job is almost un-doable. I explain to staff that these patients need us as much as anyone else but when you're fighting wildfires with a watering can - which is how it feels - I struggle to justify tea and care to someone who doesn't really warrant medical help. I've just finished a weekend shift of scores of elderly and sick people with largely preventable problems. I go home to my family and I wonder how on earth the next generation is going to cope."

" I'm a complex case manager for a CCG and I love my job - even though I often feel like the most hated person in the world. We really are trying to do good and right by people but the targets are so difficult to achieve and the goalposts move all the time. I've thought about quitting but what other job would I do? I don't want to return to nursing because I know I can do more good in my current role but I'm not an accountant and I'm certainly not great at data. I like people and I like helping them. I believe we are trying to do the right thing."

" I'm a Personal Health Budget Manager and I feel like this could be the best thing ever to happen to funding for health and social care. BUT when the rest of the team, the department and health colleagues are still unsure and even suspicious how can I deliver and meet my targets? We need everyone to be singing from the same hymn sheet and we're not. The rules and the guidance is very clear but so many aren't taking notice. There are panels clearly making it up as they go along and even breaking the Care Act. "

" I can't complain about anyone involved with my wife they're all very kind and they try hard to help. It's their bosses and the big charities I have truck with. Once they've got your ticks in their boxes or your money they don't care. I've been to meetings and events and just come away thinking what planet are you on? Sue is now terminal but we've had a good life and she's got to see the kids and grandkids. MND is b****y awful but whilst she's here we'll always look on the bright side."

" My daughter died last year and we'd had 15 years of sheer hell. I worked hard all my life and believed that I'd paid into the system so that if we ever needed help we'd get it. It's always been a bit chaotic but she was cared for and so were we. In the last couple of years not only have we had money and support taken away in the end there was no dignity either. I am regularly insulted and humiliated and it's getting worse. I'm spoken to as if I'm a problem or a hindrance, that's when I can get to speak to anyone at all. Then when my daughter was dying the social worker said that 'natural support' was enough and that if we couldn't get help through a charity she didn't have anything to offer. It was a release for our girl when she went but my complaint still hasn't been dealt with nearly 8 months later. My hell goes on. "

" I became a full time carer for my son after he was attacked. It's been hell on earth and I feel so alone and isolated. I've tried to stay in work and keep in touch with friends but when all I have to talk about is appointments and my rows with the CCG people soon stop ringing. I hate what our life has become and I find the local groups just another reason to feel bad about myself. My son is more than a brain injury and I'm more than his carer but that's all we seem to be worth nowadays. Our GP is rubbish and we rarely see the same person twice. The community neuro team is full of kids and no-one listens until we end up in A&E. I'd like Jeremy Hunt to walk a day in my shoes."

" I'm a District Nurse and I've just been told that my title is changing to Community Nurse. I don't actually know what that means except that I think I'm going to be asked to do more in less hours and for less money. I've already been asked to write a care plan for someone with TBI - which I don't feel qualified to do and support a social worker with a capacity assessment. I may be asked to attend panels and MDTs but that's not in my skill set and I really don't feel I want to do it. I just want to be a nurse and have the time to take care of people."

" I'm a solicitor and I've never felt so helpless when it comes to fighting the NHS and local authorities. The limits to Legal Aid mean that people who should be getting our help can't and when the NHS and councils can spend as much as they do defending themselves, I know that clients are being abandoned and in some cases neglected. I hear myself challenging manager's decisions to close cases but if I took on all the work pro bono I'd never get paid again. Public Law is a difficult field and I chose it because I wanted to make a difference. I'm not sure we are anymore."