Personal experiences of transformation: East of England

Darren, the manager of a residential home, talks about how communication at the residence was personalised through teaching new communication techniques to staff.

Darren's story: The Home Manager

My name is Darren and I am a manager of a residential home for adults with a learning disability. One of the most eagerly anticipated training of 2009 was a Makaton signing session, organised in conjunction with the Hertfordshire Speech and Language team. (Makaton is a system which uses signs and symbols to teach communication, language and literacy skills to people with communication and learning difficulties.)

Whilst we were organising this, we found that we had a very accomplished signer in our own organisation: a resident called Ian. Ian has Down's Syndrome and although he is able to communicate verbally, people who do not know Ian may struggle to understand him. To many this would lead to frustration and withdrawal, as for Ian it is a challenge for others to understand his specialist subject 'signing'. Therefore, when we were looking at organising follow up training in early 2010, I and the speech and language team looked to Ian to assist in the planning and delivery of refresher training sessions.

Ian was very keen to pass on his expertise and skills. When the training session took place, Ian and two of his friends who also have Down's syndrome proceeded to teach and entertain the staff - as well as enjoy staff's inadequacies (myself included) in their attempts to remember sign language! When staff went wrong or did not know a sign, Ian was there to put them right and to ensure they learnt signs exactly the right way by demonstrating how it was done. Seeing how taking part in this process has empowered Ian and given him an opportunity to proudly show his skills to a wider audience has been very enlightening for staff. Judging by the response, we will be ensuring we continue to provide refresher sessions as long as Ian is happy to share his expertise with us.

Afterwards when Ian discussed with me and the speech and language professional how the session had gone, and when asked on the staff's prowess he said 'they're not experts' and he was right. This was a good lesson to all staff, of how we can learn and be taught by people with learning disabilities. Judging from the enjoyment generated by staff and residents alike, the signs showed will be forever etched on our memories.

We are now hoping that Ian will champion the benefits of signing within the local community and work with staff members to educate and enthuse such people as pharmacists and GP's, so that not only Ian but others with a different preferred format of communication can have their voice heard without having to speak, maybe when this is achieved Ian may consider us 'experts'

Darren's TOP TIP

"Work together to produce experts."

Alison's story: The Speech and Language Therapist

I am a Speech and Language Therapist working as a Communication Lead for an NHS Foundation Trust in Hertfordshire. My job involves the development of communication services for people with learning disabilities.

Ian is a very communicative gentleman with a keen sense of sociability and respect for other people. His speech is sometimes indistinct and rushed so it is not always easy to understand what he is saying. He will persevere in making himself understood in a number of ways and is adept at knowing when people are only pretending to have understood him!

One of Ian's main modes of communication is through Makaton, a language programme of speech, signs and symbols. Ian signs as he speaks, which gives people additional support about what he is saying. This works well when people understand the combination of signs and speech. When they do not, it puts the onus on Ian to help them understand him, which makes him dependent on other people's knowledge of his mode of communication.

To help Ian, we decided to teach the people in his life the communication tools he uses. As a start point, we began with teaching Makaton to the staff in his home. Ian was involved in this process, providing a signing revision session for them, four months after the original training. He was discerning in his recognition of which members of staff knew the signs well and those who had forgotten them. His involvement was a strong factor in building his own self-esteem and in influencing the next steps in helping staff use the signs they had learned.

Alongside this is a structured development of improved community access for Ian in partnership with the home, Health Facilitation Team, Ian's local GP practice and pharmacy. A primary goal is to support Ian to become more involved in his own healthcare. Ian is a diabetic and regularly takes his own bloods. His prescriptions are collected for him - he does not go to the pharmacy to collect them himself; his indistinct speech may be a compromising factor.

His surgery and pharmacy have shown great interest in making positive use of communication systems which support speech. We have looked at the locations themselves and identified ways of making them more user-friendly for people with communication problems.

Staff at both locations will be taught basic Makaton signs and communication strategies to help Ian feel welcome and to find out his needs and wants. Ian and his home staff will be involved in the training process.

It is hoped that the work we are undertaking to support Ian will be of benefit to other people with communication problems accessing the same community places, since staff will be better informed of how to assist their communication needs.

Alison's TOP TIP

"It is everyone's job to adjust their communication in the right way so that people with learning disabilities can communicate effectively."

Frank's Story: The Learning Disability Nurse

My role as a learning disability nurse working in the health liaison team within Hertfordshire Adult Care Services is to work with people with leaning disabilities, their carers and professionals within the NHS to promote equitable and accessible health care.

Providing good health care to all is the aim of all NHS providers - but sadly aims do not always translate into practice as was documented by the Government commissioned report 'Heathcare for All, 2008' - highlighting failings within general healthcare for people with learning disabilities and recommendations concerning improvements. The recommendations embrace the need for ensuring that NHS services are flexible and adaptive in meeting the needs of people with a learning disability. This involves listening to the people they serve and those important to them, working in partnership with those providing learning disability, having a raised awareness of the needs of people with learning disabilities and their cares and adapting services to meet the individual needs. The adaptation of services is sometimes referred to as 'reasonable adjustments'.

One of the issues in providing good health care is the time pressures and the need to serve so many 'patients' within a limit period. Reasonable adjustments for people who have difficulty in articulating often mean providing more time for consultation and considering alternative communication techniques - for instance diagrams or gestures and utilising individualised communication books and health action plans - which in Hertfordshire are referred to as 'My Purple Folder'. These documents are designed to aid the communication process making the consultation more effective - and are in themselves a reasonable adjustment.

Appropriate and accessible communication is a keystone in developing and nurturing relationships. Ian's GP practice and his local pharmacist have welcomed the opportunity of working in partnership with Ian and his carers. One of the spin-offs of the improved communication that is occurring is the involvement of people with learning disabilities in the redesign of the GP practice - recognising the unique insight that can be offered by people living as a person with a learning disability. An example of how a reasonable adjustment can lead to a truly inclusive health service - Healthcare for All.

Frank's TOP TIP:

"Every person with a learning disability is expert by experience"

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