Blood In The Sand

Last month I recommended the excellent Cold Steel Rain blog, which unfortunately was stopped not long after I suggested everyone read it. The two events were not connected! 


He's back blogging at Blood In The Sand. The content is not for the faint of heart but is essential reading for anyone with an interest in military issues and/or mental health.

Hunger Strike Woman From Peterborough 'Wins' Hunger Strike Battle


A woman from Peterborough who went on hunger strike to get better medical help, including a cannabis-based drug, for her husband has won her battle.
Angela Cavill-Burch has cared full-time for her tetraplegic husband Terence ever since he got an infection three years ago.
She said he needed the drug called Sanitex*, normally only licenced for MS sufferers, to ease his chronic pain.
The drug is now being provided. Mrs Cavill-Burch's protest lasted six days.
She had called on NHS Peterborough Community Services (NHS PCS) for more support over a nine-month period.
The case was featured on BBC Look East on Monday and now NHS PCS has agreed to provide the drug Sanitex and reinstate physiotherapy as the medication works in conjunction with it.
Emergency night carers are also being provided for Mr Burch as an interim measure while full day and night time carers can be found.

Mrs Cavill-Burch said she was angry at how long the NHS PCS had taken to respond to her concerns.
"I should not have had to resort to such a drastic action to get people to listen to me," she told BBC Look East.
In a statement NHS PCS said: "A current review is now taking place to reassess these (the couple's) needs and to ensure that appropriate and effective care is in place in agreement with Mr Burch and Mrs Cavill-Burch."
Two meetings have already been set up for Mrs Cavill-Burch to meet with care agencies.

NB: Having listened to Mrs Cavil Burch be interviewed on BBC News this morning it seems that NHS PCS are not providing night carers in the sense we'd think of carers as they still have no ability to find the kind of specially trained carers Mr CB's medical condition requires. What they are actually providing is a 'safety staff' to ensure MRS CB is fully awake during the night to provide the care her husband requires.

*Dear BBC. The drug is called Sativex not Sanitex. 

I'm sorry, I can't.

I'm sorry, I can't. Even typing the words catches in my throat. Or fingers, as my throat can't actually type. Whatever. I think those four small, seemingly innocuous words are the hardest of all to say, and every time I have to utter them a tiny part of me bleeds inside. Practised in the dark arts of loss, I momentarily acknowledge the pain, that it is in fact all a bit shit, before turning my back firmly and focusing on how good I have things. 


I'm still free of Oxycontin and it's still slowly improving. I feel better than I have done in months, more alert and more interested in doing things. At times the pain is utterly overwhelming but it's a natural pain, not a drug induced one. I'm managing to do 15 minutes of stretching and physio most days, using the episode of Postman Pat BBC2 helpfully show every morning to distract me from how boring it is. Some days I'm also managing a death walk, some days not. I'm generally managing to read more of the things I'm interested in during the day, to have friends come round for a coffee and to eat a few times a day. Oh, and stay out of bed til around 9pm most evenings. These are all very good things and getting done far more consistently than they have been since the whole Oxycontin withdrawal started, but at the same time they aren't exactly the most exciting or energetic of things and they're draining every last spoon I have. 


I'm tired of having to make excuses to my friends about not being able to come to whatever it is they've invited me too. Tired of feeling guilty about not being able to do things, even though none of my friends ever make me feel that way. I'm so excited about actually feeling more awake, more able to get through each day that fortunately that far outweighs the times I feel this sadness and guilt. Disability is so intimately connected with loss and benefit that it's easy to forget sometimes the small cuts hurt the most and need their own time to heal. 


Today was a deathwalk day. It went pretty damn well actually. There's quite a few of us who deathwalk down by the beach, linked by an intangible, intimate understanding of each other, whilst remaining nameless strangers. One remarked upon how well I'm doing, that just a few weeks back I was literally dancing on the spot as I tried to progress. I balance with my arms as I become more fatigued and with music in my ears it can feel as well as look like a dance. There were kites being flown, the air was clear and fresh and the world looked beautiful. Working so hard at movement can produce the kind of euphoria any sportsperson will recognise, a simple joy of being. 


And, whilst I again had to say 'I'm sorry, I can't' to one thing, I have been able to say 'yes, I'd love to' to another.

Wife of quadriplegic in hunger strike protest

Wife of quadriplegic in hunger strike protest

A woman has gone on hunger strike in protest at the lack of NHS care for her quadriplegic husband, vowing to starve to death to win the support he needs.

Angela Cavill-Burch, 42, full time carer for Terence Burch, 65, says her death may be the only way to force the NHS to provide the help he ''desperately'' requires.
She is demanding the NHS fulfils its ''duty of care'' to reinstate his cancelled physiotherapy sessions and provides him with proper care at home. 

Mr Burch passed a continuous care assessment by NHS Peterborough Community Services in October 2009 which entitled him to fully-funded 24-hours-a-day support.
He was assigned agency carers for 100 hours a week, but Mrs Cavill-Burch and the PCT agreed they were ''unqualified'' to deal with his needs and a new agency was requested. 

The support she was given was cut to just 14 hours a week over two night while the PCT looked into providing a care agency which could better cope with Mr Burch's condition.
But after eight months no support has been found despite repeated requests for help, leaving her to struggle on her own - and they have now cancelled his weekly pyshio. 

Mrs Cavill-Burch, a former rail company project manager, started a hunger strike on July 1 as her last resort having already approached support groups, her local MP and writing to the Prime Minister. 

She has only consumed fluids for the last six days. 

Mrs Cavill-Burch, of Peterborough, Cambs, said: ''I am prepared to die for my husband, at least then the authorities will be forced to give him the care he desperately needs.
''Terence frequently asks me what the point is of him living and says he will find a way to end his life if he cannot be helped. 

''The agency workers used to sit here and do crosswords, they were hopeless and said they could not do the work involved because of health and safety.
''I drew up a risk assessment of our situation and it is so dangerous for both of us. Some nights I can't help myself and fall asleep and my poor husband has to shout at me to wake me up so I can give him his care.
''I think they are just doing this to cut their costs and because I am here and caring for him they will not pay out - they will have to if I die from not eating.
''I am effectively a prisoner in my own home and will not stop this hunger strike until the NHS stops restricting both my and my husband's basic human rights.'' 

Mr Burch was fit and active when he was struck down with staphylococcus aureus, an infection in his neck, and kidney cancer while working in Abu Dhabi in June 2007.
He was left paralysed from the neck down and had his right kidney removed while his condition became gradually worse leaving him needing 24-hour care.
He is in constant pain from his neck down and has excruciating spasticity caused by the infection in his neck which crumbled his vertebrae and depressed his spinal cord. 

The couple met in Lincolnshire in 1986 and married in 2004, and moved to Abu Dhabi in 2007 to work but returned to Britain after he fell.
Currently the couple are visited by one carer for two nights per week, who can perform the task of straightening his legs every hour to relieve excruciating leg spasms.
Father-of-one Mr Burch, a retired railway signalman, also requires help every ten minutes with eating, his catheter and is in so much pain he cannot sleep with any fabric next to his skin. 

She claims workers from agencies turned up at their flat and would either do crosswords or fall asleep after telling her they could not help him due to ''health and safety'' reasons.
Mrs Cavill-Burch is campaigning for her husband to be given Savitex, a cannabis mouth spray used for MS sufferers that will alleviate his pain. 
She is also protesting after the NHS cancelled his twice weekly physiotherapy sessions, which she says make caring for him much easier as they improve the pain in his joints. 

A spokesman for NHS Peterborough Community Services said they could not discuss individual cases but a ''comprehensive review'' of care provided to Terance was carried out.
He said: ''The health and well-being of Mr Burch and Mrs Cavill-Burch remain a priority.
"Anyone who may need care and support is assessed by NHS Peterborough Community Services to determine if they are eligible for assistance.
''If they are eligible to receive services, then a care plan is developed with them to identify the level of care they need to meet their specific needs. This plan is regularly reviewed.'' 
 

Osborne's haste will undermine incapacity benefit reform

Osborne's haste will undermine incapacity benefit reform

Rushed reforms and claims of huge welfare savings threaten the goal of helping disabled people into work
Paul Gregg, The Guardian Tuesday 6th July 2010

Reforming benefits for the sick and disabled is a difficult operation that obviously needs to be undertaken with care, given that this affects the most vulnerable in our society.

The previous British government established the employment support allowance (ESA), which simplified the system by replacing two separate benefits. More significantly it offered a personalised and non-coercive support and engagement process (designed by me) to help people return to work, instead of a system that forgot about the disabled for years at a time once they passed the incapacity assessment. These are positive steps forward.

However, ESA also has a new assessment to determine people's eligibility and this work capability assessment (WCA) is causing increasing concern. Such assessments are very tricky to get right and sensibly the government set out to trial it for around 18 months before the planned application to the 2.5m existing claimants of incapacity benefits, due to start this autumn.

The new test has seen far fewer people being deemed eligible than was expected. Among new claimants, just over a third of claims undergoing the WCA assessment were passed. This was about 20% fewer than expected. Meanwhile, increasing numbers of anecdotal cases were coming to the fore suggesting serious problems with the test. Citizens Advice has highlighted serious concerns with the test and its implementation, and estimates that among those undergoing the process around one person in five is seeking help from them.

Similarly large numbers of those being found fit for work under the WCA test are appealing and reports suggest that in some 70% of represented cases the appeal succeeds, as well as 40% of cases where the claimants represent themselves.

Signs that the government is aware of problems are shown by two significant changes to the assessment introduced in the last three months, concerning dealing with those with acute mental health problems and those about to receive chemotherapy. Furthermore, Michael Harrington is to undertake a review so that the process is transparent and people are treated fairly.
It goes without saying that the disabled community is both outraged and scared, and the government is not doing itself any favours. The statements made by George Osborne, about getting people off incapacity benefits and on to lower-value unemployment benefits, clearly lead disabled people to conclude that the aim is to save money rather than get people into the right place for appropriate help and support.

The deeper concern here is that all this will undermine ESA itself, as it will make it almost impossible to get people on ESA to take work, because they will fear that they will never be able to get back if things go wrong. Also, a large number of people with significant health problems will be moved on to jobseeker's allowance (JSA), which is designed for those who are job-ready and offers no help with condition management and no engagement and support from advisers for at least six months. In contrast, those people on ESA receive tailored, individual support programmes from day one.

This will clog up the JSA system and delay appropriate support to these groups, delaying rather than enhancing a return to work. Somewhat unbelievably, the government is not tracking those who fail the WCA test to see what happens to them; are they claiming JSA, getting work or disappearing from the benefit system entirely?

This isn't a party-political issue. The process and concerns it raises straddle the old and new government. Rather there is a deep issue here of making sure the process is working before it is unleashed on the 2.5m claimants of incapacity benefits. The recent changes to the WCA process and the newly announced review need to be assessed in the field to check that they have improved matters, and the assessments of MS and Parkinson's disease under the test also need to be checked. This means delaying the reassessment of existing claimants under the new ESA regime. Not only this, but the tracking of WCA failures needs to be undertaken to gain insight into what is happening to them.

Finally, the potential to fast track those with health problems but not deemed eligible for ESA, in order for them to gain access to earlier support under JSA, needs to be considered. The worry here is not that people are going to lose £25 a week in benefits inappropriately, or that unnecessary stress will be placed on ill people as they fight to keep the support they deserve, but that the haste and claims of huge welfare savings will undermine rather than enhance the goal of helping disabled people into work.

In the longer term, closing the gap in benefit rates between ESA and JSA would help remove much of the mutual suspicion of "gaming", either by government to get people off ESA or by claimants to get on to it.