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School of Education

The experiences of people with rare syndromes and sensory impairments in hospitals and clinics

Dr Liz Ellis, (University of Birmingham) Lucy Keenan (Sense), and Dr Liz Hodges (University of Birmingham)

21st October 2015

Funded by Sense

Research report prepared for Sense on the project


Contents


Acknowledgements 5

Glossary and abbreviations 6

Executive Summary 8

Introduction 22

Literature review 26

Rare syndromes and rare syndromes clinics 38

Methodology and ethics 48

Analysis of patient experiences of clinical settings 58

General themes 167

Conclusion and Good Practice 179

Appendix 188

References 196



List of Tables;

Table 1: Participant numbers, age, and gender according to syndrome type 55

Table 2: Environmental Audit – Hospital, general signage 80

Table 3: Environmental Audit – Hospital, movement within corridors 81

Table 4: Environmental audit – Hospital, (main) cafeteria 88

Table 5: Environmental audit – Clinic, toilets 94

Table 6: Environmental audit – Clinic, reception 101

Table 7: Environmental audit – Clinic, entertainment facilities 111

Table 8: Environmental audit – Clinic, waiting area noise, lighting, and space 114

Table 9: Environmental audit – Clinic, seating 121

Table 10: Accompanied clinic visit and list of consultations 126

Table 11: Environmental audit – Clinic, consultation room noise and lighting 141



Acknowledgements


We are grateful to many people who made this study possible; putting them in any kind of order is impossible. They were all essential.

Firstly however, we are very grateful indeed to all the participants who gave their time, both patients and their families, and were so ready to talk to us and allow us to learn something of their lives.

We are also grateful to the hospitals and the hospital staff who helped and supported us, most especially;

Professor Timothy Barrett, Birmingham Children’s Hospital, who was our key medical contact and helped us navigate the ethics process

Our other principal investigators who gave us their time and support and allowed us to visit their clinics:
Dr Tarek Hiwot, Queen Elizabeth Hospital Birmingham
Dr Jane Valente, Great Ormond Street Hospital London
Mr Martin Snead, Addenbrooke’s Hospital Cambridge

Professor Andrew Webster, Moorfields Hospital London

They all have more than enough to do without helping us. We are very grateful for their time.

Other clinical staff also supported us and allowed us to visit their clinics, we are grateful to all and especially to Mr Robert Henderson. We would also like to thank all the staff in hospital research departments who supported us in navigating sometimes complex systems.

We would like to thank all members of the advisory committee and especially Dr Isabel Clare for her support throughout. We thank Yemi Tadesse from Sense for her input in the early months. We are also grateful for the contributions of Dr Anna McGee from Sense for her support, advice and encouragements and Dr Graeme Douglas, University of Birmingham, who provided advice and inspiration in his support for the project.

Glossary and abbreviations

1.1Glossary


Chorionic Villus Sampling – a medical test which can identify certain abnormalities in an foetus by taking a sample of the placenta.

Ciliopathya disease of the cilia - ‘hairs’ which perceive sensory function. Alström, Bardet-Biedl, and Usher are ciliopathy conditions.

Communication professional – a person whose job is to act as interpreter or communication intermediary, in this case for people who are deaf or deafblind and use communication methods other than speech

Cryotherapy – the use of low temperature in medical treatment. In this report it refers especially to the use of a cold probe to freeze a detached or detaching retina in place.

Deafblind manual – a method of spelling out messages on a deafblind person’s hand, letter by letter.

Hospital Passport – a document listing a patient’s needs, communication methods, likes and dislikes and sometimes more, for someone who cannot communicate well themselves or who needs to show it to many people.

Intervenor – an individual working in education or social care to support the needs of a congenitally deafblind person and give them access to their setting

Makaton – a sign language vocabulary system especially designed for people with learning disability

Retinal dilation – a procedure using eye drops to make the pupil expand so that the retina can more easily been seen by a doctor. As the retina is forced to expand, more light gets in and patients are very affected by glare and cannot see clearly.

Retinal pigment epithelium – the retinal layer that nourishes retinal visual cells


Slit lamp – a medical instrument using a bright beam of light to examine the eye

1.2 Abbreviations


BBS – Bardet-Biedl syndrome

BCH – Birmingham Children’s Hospital

BSL – British Sign Language

CRS – Congenital Rubella Syndrome

GOSH – Great Ormond Street Hospital

IRD – Infantile Refsum Disease

NF 2 – Neurofibromatosis type 2

QE - Queen Elizabeth Hospital Birmingham

SSE – Sign Supported English

Executive Summary


This study was born from informal discussions with people with rare syndromes (particularly those with sensory impairments) who were describing difficulties they were having as patients. In many cases they were already carrying a large burden of problems; they had multiple, complex individual symptoms, and they were often aware their conditions could or would deteriorate; they were dealing with a world unfriendly to people with sensory impairments.

The research study was therefore set up to investigate the following issues;



  • How do people with sensory impairments (and their families/carers) experience their attendance at clinics in relation to their rare syndromes?

  • What are the factors in relation to clinic type, environment, and attitude that affect this experience?

  • What makes the delivery of services efficient and effective for people with sensory impairments and their families, across and between clinics and what factors might inhibit this?




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