Dear Mr Cameron
First of all, congratulations. I always hate to be accused of being a bad loser. I didn’t vote for you and I never have but given the circumstances, I guess if you can’t beat them you’ve got to join them. After all, we’re all in this together. This is certainly true of my colleagues in the disabled community. That’s why I’m hoping that I will be able to share this letter as broadly as possible so that a few of the uncertainties that I am putting to you can be shared with others in a similar situation.
I’m a family man, with a stalwart wife and two young children (four and nine). I’ve got a deteriorating neurological condition (MS) which is rapidly going in the wrong direction. Our youngest child has a hereditary problem which gives him something of a sickly constitution. Obviously, being in my position all of my energies are drawn to giving him a good start. I know this idea of having a good start is something that you refer to quite a lot when it comes to youth. I like to think of myself as the captain of the ship. We need to be prepared to tackle choppy seas ahead. The key word is ‘robustness’. I like to think that we are able to play our part in supporting the UK plc. Furthermore, I hope to be able to tackle any further surprises that may await us. The longer I can keep things together, the longer I can postpone impending care needs. At least if things are not going right for the ailing captain, I can at least witness my family negotiating successfully the choppy waters.
Which brings me to the main point of my letter. I have been the subject of a ‘means assessment’ … no, in fact, two means assessments. The first of these is to look at my entitlement to some kind of financial support for adaptation costs. The second, to look at financial support for carer costs. I appreciate that these types of means assessment are necessary: after all, we are living in an era of austerity. I think in both of my means assessments, the ‘computer has said no’. It seems as if I am better off than many disabled people who are unable to work (yes, genuinely unable to work). I am indeed lucky enough to have a decent (early retirement through ill-health) private pension. I can hold my head up proudly and say that I’m also a regular taxpayer (should I be proud of that?). I feel troubled by these means assessments though. It seems as though the cut of the jib is extremely fine. I’m not sure that we are in any way prepared for the stormy waters ahead (I’m probably running out of naval metaphors here). I am way past worrying about my own situation, but the thought of watching my family struggling in financial difficulties continues to haunt me. Soon I may have lost the voice to fight their corner. After all, I wanted to see my sons have the best of starts. Perhaps not at Eton: but, at least to be able to attend after-school clubs. I can’t remember that item appearing on the means assessment – obviously something of a luxury.
So what does it mean to be well provided for (failed under the means assessment)? Well as a family we fall into the ‘3rd decile’ of the income distribution. That means that across the UK 7/10 or 70% of the population with two adults and two children are above our income level. I guess that means that we are not so much the ‘squeezed middle’ but the ‘kicked groin’ … a little bit further down in the nether regions.
My wife doesn’t work. No, that’s a lie, she works tirelessly and without complaint. She is my carer, my youngest boys carer and of course she is their mother. She doesn’t drive me around, as we don’t have a car. But life doesn’t cease to have meaning without one.
The computer never actually said ‘no’. It simply said, come back later when choppy waters become tsunamis. The messenger is of course our local authority. But their hands it seems are tied by the national means assessment. Come back when your carer needs exceed £1400 per month. Come back when you’re adaptation costs exceed £56,000. This seems to be a veiled way of telling us to swing on it. Don’t call us we’ll call you.
Filling out a means assessment is a pitiable exercise. We have all of the easily identified expenditures including insurance, mortgage, utilities, travel and of course shopping. This is then set against your income (any disability income seems to be matched by tax in our case). The resulting number always seems to suggest that you are replete with money. Money left over. Money for having a good time. Of course, having a good time should not be at the state’s expense. Having something left is a luxury that we can ill afford. After all, isn’t life about survival, it’s not about being able to enjoy yourself. We’ll have that! It will pay for your carer needs and your adaptations. And what about contingencies. Roof repairs, boiler replacements and even declining health?
So I’m stuck with my downstairs commode, tied with bits of string to my medical bed. I often try to recall what it was like to have a shower or bath. But I can get used to just having a strip wash every day. I just imagine that I’m a prisoner in a Japanese prisoner of war camp. Making every attempt to postpone the onset of bedsores and infections. This has gone on for longer than I wanted. The local authority in their wisdom decided to use up six months of my time pretending to measure up for an adaptation, giving us false hopes that funding would be forthcoming. Then the computer said ‘no’. Maybe this was the wrong way round? An early decision would have avoided months of precarious balancing and falls in a ‘Heath Robinson’ improvised bedroom. Now I need to get on and arrange a loan. Not something I want to be doing in my situation but needs must.
Am I beginning to sound like a whinger? I know that there is no place for whingers in our modern conservative Britain. I need to roll up my sleeves (at least, I need to get my wife to roll them up). I also need to have ‘faith’. Faith that I will not get any worse. Faith that caring costs will not kick in too much and my wife will stay fit and healthy. I thank you David Cameron for the faith that you have shown in my ability to fight this wicked disease. You clearly believe that I will succeed in this fight as there doesn’t appear to be any provision for things getting worse.
Maybe you could share this letter with the squeezed middle of the UK (both those that chose to to run with you and those that chose to stand up to you). It’s worth reminding them that there doesn’t appear to be a safety net. Perhaps they are under the impression that if they hit hard times then their diligence in maintaining a pension pot might also protect them and their family should they be struck by a serious illness. Could I suggest that this seeming security is illusory. When the shit hits the fan any financial provision that you may have made will be swiped away into the coffers of Westminster. Life will become about survival (with an illness) rather than having a fulfilled life for you and your family.
My advice to others is to stay lucky and keep your family lucky. There really is no safety net.
For my friends affected by disability (carers, wives, children and sufferers) I share your pain.
And as for you Mr Cameron, can I ask you to allay my fears: convince me that there is some slack in all of this and that the wheels are not about to fall off.
PLEASE, PLEASE SHARE