User participation fails again

Last year I moved from being funded by the council to being funded by the NHS. I employ the same Personal Assistants, just the funding has changed. Most people who qualify for a Personal Health Budget (PHB) like this have to meet challenging criteria needing daily health care support.  I’m a big fan of personalisation – probably why my working life was always in this field. If done right, with good information and support, it can really help people have a better quality of care and support. For many it can be life changing.

When I was told I had met the criteria I was asked if I wanted to take part in peer support or consultations about using PHBs. I’m all for participating in things to help more people use a PHB so I agreed to be a contact.

Early February I was contacted by Skills for Care to review their online information for people who employ Personal Assistants and use a health budget. For participating they would pay me £15 an hour for around two hours of ‘work’ spread out over about 3 weeks.

I immediately said I was interested.

and so followed:

  • A 14 page participation policy
  • A 3 page form to detail how I found the online information I would review (the ‘work’)
  • A 4 page payment form to complete
  • A warning that I needed to seek benefit advice as a fee would be involved.
  • If I participate I become an Advisory Group Member.
  • A note to go to the HMRC website and fill out a employee checklist for tax and NI.

On that note, considering I am in receipt of benefits because I can’t work and all I wanted to do was provide a review of their PA resources, I’m out.

How can people participate when faced with all this. It’s too much. Too exhausting. 

If I do the above I could be viewed as looking to take up employment – I’m not, I just wanted to review a website over a period and time I am able to. People on benefits can receive participation fees, as long as it’s not a long term thing that would indicate they could work.  All of the above might suggest I am working. I’m not taking a chance on that.




Will it be sunny in June


Without the right level of health or social care a life once filled with colour can turn into a miserable grey existence.

A spring flower that once bloomed brightly and stood tall can swiftly become a shrivelled, dull and lifeless plant. With not enough water and sunshine it is destined for the compost heap.

Yes readers, life would be that shitty if I lost my health and social care support that is my water and sunshine.

Yesterday the clouds came. Like many disabled people in the UK my Independent Living Fund is withdrawn in June. This money gets added to some from the council and I use it to employ my assistants. I’ve done this since 1993. It’s been known for over a year that the Fund was closing – yet the council leave it to the last minute to come up with a funding proposal.

Assessments are physically and mentally draining. They cause a lot of worry and need a lot of concentration. They make me ill.

I sat through a 2.5 hr assessment from Adult Social Services to gather information. A panel of people who don’t know me will then decide on whether to take over funding or cut my money. 

I meet the criteria for the NHS to fund my assistance. The information will also go to them. A NHS panel will also see a letter from one of my specialists and may send someone out to ask more questions. They have 28 days to make a decision. 

I’m told that they rarely fund anyone in Kent. Most of my friends with the same level / type of impairment are funded this way.

It’s left me exhausted. I worry that the complexity of my care won’t come across on paper.  What if I forgot something? I keep going over and over it in my mind. 

After the last care assessment (about 6 months ago) I explained my needs. The copy of what they wrote had three glaring errors.  Two of them were getting the name of my medical condition wrong and saying I used oxygen when in fact the machine is a ventilator breathing for me. Based on that alone leaves me with no faith in the system.

At least I get to see what they wrote to check accuracy before the panel see it.

So I will just have to wait and see what happens.

Ending a child’s life

A report from Great Ormond Street Hospital was published yesterday in the Journal of Medical Ethics.

Doctors cited Article 3 of the Human Rights Act to support their opinion that a review was needed on the ethical guidelines around situations when parents want treatment to continue but medical staff feel the treatment is too aggressive and futile – and that their child should be allowed to die.

Article 3 is about making sure a person is not subject to torture or degrading treatment.


Worryingly, the doctors insist:   “Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitised by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane.”

So is it inhumane to keep me alive then as an adult in this state? Will doctors be demanding courts to end my life just as they want the courts to demand to end the life of a child with the same needs?

How is ‘torture’ and ‘dignity’ measured or viewed and at what point does Article 3 take precedent over the first Article of the Right to Life?


Article information via Very religious parents causing suffering to sick kids, says report – Yahoo! Lifestyle UK.

I dream of sleep

For a many years I have been unable to move in bed. I can’t turn over or move, I can’t turn my head or shift my weight. I can’t speak clearly as I have a mask over my face attached to my ventilator. I get open sores on my face sometimes, lots of pain and sleepless nights.

I’ve been applying to the NHS for a year now to have a specialised profiling/hospital bed. I have finally got to the point of them giving me a home trial… possibly.

My drawing tonight is a celebration of over a year struggling with sleep and hope of comfier nights.


Assisted living – comments re Mr Nicklinson’s quality of life.

I’ve written before on assisted dying. I’m currently in the ‘Not Dead Yet’ camp. I’m the sort of disabled person people would easily say ‘would be better of dead’. This petrifies me. I’d rather people focused on getting me the things I need to live a good quality of life, personally.

The film shows the gentleman being cared for – dangled from his hoist, legs apart in full view of the camera virtually naked – with no covering to provide dignity. Based on this sort of film footage we heard, from both him and his family, why he wants to die. I would be horrified if any carer did that in the privacy of my own home never mind in front of a camera! No wonder he feels he has an undignified life if that’s the way things are done!

I’m not going into the issues for or against but what worries me about this (and what Mr Nicklinson didn’t seem to see as an issue) is the number of comments to these news stories from the public. e.g. “After watching this programme , could anyone explain to me the reason for keeping this man alive…”. That is the whole problem, people make judgements on the lives of severely disabled people based on ‘what they observe’ from a TV programme designed to portray life as intolerable!   For better or worse, nobody has clue about what life is really like – unless you are the one living it.  Even when you live with an impairment your judgement is often clouded by other factors that change from day to day – personal mental / physical health, pressure and opinion from other people / family / friends / public , self confidence and whether you have found something interesting to do with your day!

If someone saw me, laying in bed, unable to move, dependent on a ventilator and sometimes in considerable pain… they would probably say I should be put down like some pet dog?

A torrent of ‘I agree’ posts follow this story liking the lives of disabled people to those of pets who they would have put down. These are the same people who want a public vote on euthanasia issues and similar issues.  I am not a pet – I’m a human being with the right to life?

I fear that people would end their lives when there is still a lot of mental health and physical support that might have helped (for them and their families). How sad that those who have managed to end their lives, could not access that at a time they needed it 😦 . Maybe they would have had second thoughts? With budget /care cuts, cuts for equipment and things that would make life good (but you are denied unless you can pay for them privately) …. these are the things that push us to an early grave.

I wonder if we will ever find the right balance of allowing people to die (or be killed) versus protection to preserve the lives of those who prefer to live? How long do you give people to mentally and physically adjust to acquired impairment before you agree to kill them, as they may request? Better than expensive, long term rehab and counselling?