A patient passport that’s all about me

Simon Cramp describes his work with Chesterfield Royal Hospital to develop and launch a booklet so that patients who find communicating with clinical staff difficult have all their information in one place, making hospital appointments and admissions easier for patients and staff.

My twin brother and I were born three weeks early, weighing less than two bags of sugar and to begin with we didn’t breathe.

We were born in August 1971 in a theatre, not an operating theatre but a lecture theatre so that the student nurses and doctors could observe a multiple birth.

My brother died just over three years ago and I was born with a learning disability, long term heart problems, diabetes, arthritis, dyslexia and dyspraxia, so I sometimes get my words in a muddle and I am very clumsy. I take lots of different tablets but I am just grateful to be alive and living in my own home.

About 18 months ago I had to go into hospital to have a procedure checking how my heart was doing. It meant I needed to stay in hospital overnight.

I found out that when people go into hospital as an emergency, or for something which is planned like mine, they can’t use the medicines they would usually take at home because a hospital doctor needs to give you another prescription. This meant that I didn’t get my normal tablets until midnight. I was also given a bed on a ward where someone was talking all the time which meant I couldn’t get to sleep easily.

I thought this wasn’t very good for people with a learning disability as sometimes we find it hard to communicate with clinical staff or have things we need to talk about which are sensitive or difficult. So I talked to the patient and liaison service (PALS) about how we could make things better.

I suggested we developed a patient passport or, as the hospital has called it, the ‘About me’ booklet.

It includes the ways a person likes to be communicated with and other things staff need to be aware of. It fits easily into a pocket or handbag and is an easy-to-use reference guide. It’s intended to help health professionals during clinical discussions with patients that go beyond what is included in a person’s medical record.

The passport asks about things like what people think they are taking medication for, do they need glasses, how they normally behave and it’s all about helping people with autism, a learning disability, mental health or sensory problems. The book stays with the patient and can be added to the red bag scheme for those people who are being admitted to hospital in an emergency.

Vikki Develin, the Trust’s Patient Experience Manager, explained: “The booklet highlights straight away whether a patient has any communication difficulties. It will allow our clinicians to see, at a glance, some of the vital information that they would possibly have difficulty obtaining, as well as helping them to quickly understand how they can best communicate with the person they are seeing”.

I am really grateful to the staff from the hospital for taking my idea on board and working together to develop it.

The ‘About Me’ books can be picked up from PALS in the hospitals main entrance and will also be handed out to patients on the wards and in outpatient clinics. I hope that having the booklet will help make people’s experience of hospital better and will be a helpful tool for the Trust to improve patient care.

The session is entitled ‘Workforce and Leadership Development in health, social care and education through Ask Listen Do’, and looks at how strong practitioners or organisations are at asking, listening and doing in relation to their contact with, service provision or commissioning for children and adults with a learning disability, autism or both and their families.

Simon Cramp

Simon Cramp lives in Chesterfield where he promotes the rights of disabled people at every opportunity.

He has a learning difficulty himself, and works with people with learning disabilities, helping them get the right support and information. He offers expert advice on all issues to do with learning disability and has extensive experience working as a consultant throughout the learning disability sector and was an early member of the National Forum for People with Learning Disabilities.

Simon has a great interest in politics and political structures and has always been keen to get involved to make things better. He is also a powerful advocate on making writings accessible and he worked for several years as a member of the advisory committee on older and disabled people for Ofcom. He has also worked at a senior board level for two major learning disability organisations.

Simon has been an important advocate for personalisation and co-authored a key paper on supported decision-making with Simon Duffy in 2004.

One comment

  1. Alain Catzeflis says:

    This is a great idea. Provided a) the individual ‘owns’ the info and b) it doesn’t get messed up and inevitably buried in the files that almost never get more than a cursory glance. Alain Catzeflis Steering Group Alliance for Camphill