NHS England Survey

NHS England have a survey
for people with learning disabilities, their families and support staff. They want your experiences of complaining about socialcare, health and education.

If only they listened.

If any group of workers is likely to have contact with disabled people regularly its probably healthcare workers so why do so many of them lack basic disability and mental health  awareness?

Today I had a routine over 50s mammogram. Its unpleasant anyway but but my experience had added extras, my carer being refused entry to the room when I needed assistance, them trying to dismantle my chair, when I said no, and when I said hospitals sometimes trigger my PTSD telling me not to be scared. My carer was allowed in after they realised my chair wouldn't come apart, to assist me to transfer, only for us to be told how we should do it, we just carried on regardless. She also supported me when they ignored the fact my sitting balance isn't that good when I told them this.

A few days ago an OT thought it was a good idea if someone accompanied me to a wheelchair assessment to help me choose a chair. This was after she agreed what my needs were and said I obviously knew what I needed.

A few months ago a nurse at a different surgery in the group I go to asked to speak to my carers after I said that going to the surgery increased my anxiety. I said I was alone, she said no you can't be, people like you have to be made to come.

I've had some fantastic care some staff always go tbe extra mile when needed but the less good staff detract from the good experiences. Disabled people or anyone with additional needs are people and deserve the best quaulity of care as does  anyone else. I only ask that they listen and work with us, we are the experts on our own situation.

NHS Mental health services local survey results

My local paper  asked people for their experiences of local mental health services. I largely agree with their survey findings, which I didn't take part in.  Below I've copied  my comments on the article on their facebook page:-

I have to pay for therapy, after using all my NHS allowance, the therapy didn't help me that much, I ended up in hospital after taking an overdose, I had told my therapist I was struggling, got told to make more effort. It wasn't the CPFT, but another provider. I had waited a year for treatment when I saw a nurse for a physical reason and freaked out. That speeded it up if you can call it that. Before being on the waiting list I spent months whilst they decided whether I needed CPFT or the other provider. I got referred to CPFT 7 times including during treatment, because the theapist I saw thought my needs were too severe for her service whilst CPFT said I wasn't unwell enough to need them. Falling between the two made my situation worse. I didn't get the right care. I saw a CPN once ahe said there wasn't much wrong with me because I smiled at her. She also asked if I was anxious, as I have complex PTSD caused largely by my 'treatment' by other professionals not linked to the NHS that was a fairly safe guess! She then decided I needed only 12 sessions with the  other service and I would be much better. More than  30 NHS sessions and 4 years with low cost private therapy and I almost at the end of regular sessions.  What happened to me went on for a long time, so was never going to end quickly. I would never willingly start treatment with the NHS again. My therapist now is amazing.

Mental health care needs treatment not prevention

Mental health is in the news again as its announced young people will get help to manage exam stress.Thats great, if they follow through and if its real help not a tick box exercise. I suspect sadly that it will go the way the rest of the Conservative mental health promises have, great big obvious U turns, full of nothing but excuses.

There were going to be more nurses and psychologists so that people got care quickly, they failed. More beds so that people don't end up in police cells, but they still do. Access to services earlier, great but they meant first level for those with milder conditions, there still isn't enough help for those needing more. Too many people have to wait for a crisis before they get care, if they are lucky!

There is a mental health crisis in this country that the government pretend to tackle by tinkering and making promises they don't keep. Any preventative measure is welcome but not at the expense of those needing treatment now, and not getting it because the Government don't deliver.

This patient is losing patience

My GP surgery is a super surgery, a group working as a single practice. Its really not that super because just the level of demand causes issues, it must be awful to work there. I've had phonecalls asking if I really need an appointment I've booked, reminders for appointments not booked, demands that I go to a site that I hate for appointments, and random texts asking if I would reccommend them.

Todays event was yet another patience sapping event. I went online to check an appointment time, only to find I had another appointment booked that I hadn't been told about, werevthey hoping I'd get bored and just turn up by chance? They have enough difficulty giving everyone appointments so why make appointments parients don't know about and are likely to go unused. I rang up to rebook it because I can't go that day. I asked why I hadn't been told, you probably would have  been beforehand, its 2 weeks away. You might be on a phone list.  Yes but it could have been wasted and why do that?  To make sure you get appointments. Do patients not get a choice now? yes you do you can choose if its convenient!  I gave up at that point. I've decided I don't need the hassle or the appointment and the complaint is already sent.

I have to ask why they make a situation that is difficult for everybody even worse and why risk wasting appointments that are often as rare as hen's teeth?