Sam’s Story – Don’t Take No For an Answer


Direct Payments


They say that “Those that shout the loudest, get heard first, but it’s the ones that speak softly to the heart, that get remembered”. It pays to be kind and to be sincere towards others and shouting will usually get us to the back of the waiting list or conveniently ‘forgotten’. Sometimes though making a good old fuss actually pays off!

Since moving to London over six years ago I have faced many barriers and had to fight for my benefit entitlements. I still get a shiver down my spine when a confidential brown letter arrives in my letter box: “Here comes another benefit cut…”. Many of you reading this will relate to that.

One of my most stressful battles has been securing my carer Direct Payment. For those of you who don’t know, “Direct Payments” are a Government initiative that, in theory, gives service users (i.e. me) money directly to pay for their own care, rather than the traditional route of a local authority providing care direct. This is supposed to give the person receiving the care more autonomy. Sounds pretty straight forward, right? Wrong!

You’ve all read about the “postcode lottery”. Different local authorities have different budgets. Unfortunately for me, London and its many boroughs struggle with the high numbers of people requiring help and it can be hard to get past the obstacles in your way.

The first hurdle is proving you actually need care. You have to be assessed – sending a picture of you in a wheelchair or in hospital isn’t enough. The assessment process can be unpleasant with questions ranging from your bladder habits to your mental health. Once you’ve been assessed by someone (who may not be a qualified medical professional and might have little knowledge of disability) they decide how many hours of care you qualify for. You may think you need 24 hour assistance but the local authority may not agree! In the past the carer could take you out for social events, like the cinema, shopping meeting friends etc. Now the provision is limited to personal care such as dressing, bathing, and preparing food.

Another problem with the Direct Payment system is that some local authorities require the service user to contribute towards their assistance even if they are not in employment – the postcode lottery again.

However, don’t feel desperate, frustrated or defeated. After reading my story you’ll hopefully see that there is light at the end of the tunnel.

Before I came to London, I received 21.5 hours of care time under the Direct Payment system. This enabled me to live an independent life and though I was in full-time employment I was not required to contribute because the local authority funded all my care. I was therefore able to budget for any unforeseen broken bones. After the move to London and another assessment, I was denied any hours, with one assessor pointing out that as I could use a microwave I was self-sufficient. I appealed and was awarded 3 hours and two years later a broken femur “boosted my needs” and that was increased to 10.5 hours but I had to contribute £21 a week. Only when I moved boroughs again did I decide that I was going to fight for everything and push for more help. After yet another Direct Payment assessment I was awarded 15.5 hours but my contributions were increased to £57 a week. I felt penalised for moving to better accommodation so I appealed again. I was successful – the 15.5 hours of care time stayed the same but my personal contribution was removed, saving me £228 a month!

So here are my top tips for appealing against Direct Payment decisions:


 This will get personal


You are going to have to share some of your most personal information and you will feel vulnerable. In essence you have to list all that is ‘wrong’ with you rather than being proud of what you have achieved. To win the ‘game’ you need to stay strong and keep reminding yourself of the end goal – your independence.


Don’t assume


I don’t mean this in a disrespectful way but when you are writing the appeal letter don’t assume any particular knowledge of disability among the members of the appeals board. Give as much detail as you can about your condition and how it affects you and those around you (friends, family, work colleagues). Be completely explicit.


Give statistics


The charity SCOPE did a survey  in 2019 on extra costs incurred by people with disabilities. Write those statistics into your appeal. You can’t argue with concrete facts!


Play to their Human Side


Show them you are a person not just a number but someone that deserves autonomy, independence, freedom to live as an integral member of society. Without your carer you cannot go to work, or have a social life. Give examples of times you have not been able to get shopping, go to the toilet or not managed to get to a job interview.


Evidence, Evidence, Evidence

Keep a diary and receipts of even the most insignificant things. What do you spend your money on? This can be anything from electricity bills to extra tampons. You may use more electricity from washing clothes that rub against your wheelchair or charging your electric chair every night. New clothes may get damaged by your wheelchair or when the doctor has to cut you out of them when you break an arm. You may need to buy new bedding and use more washing powder because perspiration is a common symptom of O.I. Go through your daily routine and pick out all the extra cost you have, big and small. State how inaccessible public transport is and that you need to rely on others to get around and the added cost of petrol or taxis. Wheelchairs cost a lot in maintenance (e.g. new tyres) – I keep every receipt from every flat tyre. I highlighted that pavements with glass and pot holes meant my wheelchair got flat tyres. Do you get pressure sores or rubbing from plaster casts? Do you need ointments and creams that aren’t covered by the NHS? Do you need additional equipment such as a sliding board or cushions for support. Keep receipts!


Remember mental health

This can still be a taboo but it’s vital for you to mention your mental health in your appeal. Remember it is completely confidential and can ultimately help towards increasing your hours and reducing your contribution. Anxiety and depression at times can be as debilitating as having a broken collar bone so say so.

Be Thorough

If they are asking you to make a contribution, clarify where this money is going and point out that you need emergency funds for care at weekends, bank holidays or from agencies. Find out the hourly rate of local care providers and highlight this in your appeal.

Never forget your worth

You are entitled to help and you will show them that you won’t settle for anything less.


Be strong, stay firm and shout loudly!!! (AND KEEP RECEIPTS)











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