Saturday, 2 March 2013

Make It Simple.

At the Bassetlaw Dementia Summit in February, one of the carers delivered a plea from the carers' group.

'Our lives are hard enough. Your jobs are to make them simple.'

She went on to describe difficulties with diagnosis, difficulties with inconsistent carers, and most of all difficulties with social care, particularly the finance department. The challenges were clear. Sometimes we place obstacles for patients and carers, make their lives harder.

This week I've learned from experience. I'm a GP. I know the system. I'm confident on the phone. I understand which forms are which. And yet it's been a struggle, taken a lot of time and made me realise how hard the system must be for vulnerable patients, particularly the elderly or those with dementia.

The task? Sounds simple. A close relative has terminal cancer, is elderly and has dementia. He's struggling to get to hospice appointments, is starting to fall. He needs a blue badge or will become housebound. I offered to help. The forms were complex, quite medical. No mention of terminal illness though. I completed them, took a passport photo for him and rang the council a few days later to ask how long it would take to process. I was told 3 months. He doesn't have that long. They could expedite it if I could get a copy of his DS1500 (a form confirming terminal illness). This was completed a month ago. He hasn't got a copy, gets upset when I ask him for paperwork.

Nowhere on the blue badge form did it mention a DS1500. I couldn't get a copy from his GP, Macmillan nurse or consultant. The lady on the phone said they couldn't accept anything but the form, not even a letter from his GP. He'd probably have to come in for a medical. Where would he park? Would they ask him questions despite his dementia? Nothing they could do. I was given the complaints number. They were 'just following the rules.'

Anyone who knows me would say I'm a determined advocate for patients. After 6 phone calls I was eventually told I could get a copy from the Department of Work and Pensions. They're apparently happy to issue copies. I rang them. They denied ever doing that, until after another 3 calls a kind lady agreed to send one to the patient, for me to send to the council. I'm currently waiting for the post.

I've learnt a lot. Patients describe similar experiences regularly. This is just one example. Their lives are complicated enough. Where we can, we should make it simple.


  1. A familiar story which shows how criteria and eligibility issues can mystify and obstruct just when we're at our most vulnerable. One helpful person makes the difference, but there are a disappointing number of professionals who mistake the criteria for the job. There are fantastic social workers, managers, and other 'gatekeepers' out there, but there are others who take a perverse delight in spelling out how the rules stop people having what would really help.

    Tim Sanders, dementia lead, Leeds

  2. Thank you for sharing your experiences; I have witnessed similar procrastination when a terminally ill person asked for telecare to raise an alarm to daughter across the road if she started choking - she had already lost her speech. Community Care was unable to provide or even advise since she was not 'open' to Social Work - so much for single shared assessment!

    I agree with Tim's comment too - it is often the systems and not the individuals but systems are for an organisation's benefit and the customer really should not even be aware of they systems. Sadly within the organisation it is easy to get so 'systematic' that thinking goes out the window.