As a Frequent User of the NHS...

Personal Prescription

As a frequent user of the NHS due to disability, I believe significant problems consistently reoccur in two (often interlinked) areas - lack of funding and lack of disability awareness. The first is naturally complex and contentious. However, I believe that the second would be relatively cheap (in most cases I would argue that it would cost nothing in financial terms) and would be simple to rectify or to at least minimise its negative effects.

Evidence Base

Frequently, things are done/said to disabled people without thinking - we are not the "text book disabled person" read about in training manuals, we are real people with feelings. I do not suggest that practitioners set out deliberately to offend, but often due largely to time or budgetary constraints, regrettable and avoidable offence and distress occurs.

Commissioning

Ministers and health workers often say that they want patients more actively involved in their healthcare and treatment. For me, a basic prerequisite of this is to listen to the patient. Unfortunately, I am sure due to time constraints and other pressures, this is not always done - especially with people who have communication difficulties or require clarification. (This is also a common complaint I have noticed among non-disabled patients, who leave feeling confused because medical jargon rather than plain English is used).

A further long-term problem, is a lack of accessibility - eg no disabled toilets, no locks on toilets/changing areas and a lack of privacy for intimate procedures - though I would argue that these changes are long overdue in a 21st century NHS. I have encountered all of these issues (as have many other people I have spoken to) on several occasions. I have often had to change for Xrays etc., in consulting rooms with no lock on or with the door ajar (apparently on health and safety grounds), with people walking in on me. Once I was left in the public cafeteria in a hospital gown whilst other gowned non-disabled people waited out of public view - apparently the waiting room was too small for a standard size wheelchair.

Surely in the 21st century disabled patients should be afforded the same degree of dignity and respect that non-disabled patients expect? Additionally, on several occasions, curtains have not been pulled around the bed or the door left open before being examined despite my contrary requests - again, staff assumed that I would not mind - surely it is not too much to expect these basic courtesies to be done automatically?

Costs

Of course, many issues affecting disabled (and non-disabled) patients are not easily rectified and/or require government action - eg funding for healthcare. Nevertheless, in my opinion a welcome start that staff could implement quickly and cheaply would be to ensure that all patients are listened to and not discriminated against - especially not on value for money grounds - which was the reason given to me a couple of years ago - I was told that whilst the operation was possible and normally recommended, it would not be offered to me because it was not considered "cost effective" to give disabled patients treatments that provide alleviation of symptoms but not a cure of the disability. The only cost implications I envisage would be due to the possible extra time it would take to afford all patients dignity and respect. Additionally, training courses for disability awareness might be undertaken, though I would argue that this is unnecessary in this instance, where common sense and respect for all would suffice (and are free). Also, training courses tend to reinforce the "textbook" disability stereotype model, which I argue is unhelpful for recognising the diversity of patients' experiences, needs and wishes.

Questions & Connections

Social model versus medical model of disability

Carers' needs/voices versus medical "experts" versus patients' needs/voices - who is dominant and who is ignored/ marginalised?

Who defines "need"?

Is need or cost dominant?

Disability and elderly care - different or similar "needs", outcomes/concerns?

How much extra funding would it take to provide an equal standard of service for all?

Is equality ever possible, or is meeting the needs of diverse patients more important?

Should there be a cap on levels of expenditure or should all patients get all the care they need regardless of the cost?

Who makes up the shortfall?

Who provides the care?