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Type and Title of Submission


Title:

A Buddy Scheme for Pulmonary Rehabilitation

Description:

Category:

General

Does the submission relate to the general implementation of all NICE guidance?

No

Does the submission relate to the implementation of a specific piece of NICE guidance?

Yes

Full title of NICE guidance:

CG12 - Chronic obstructive pulmonary disease

Category(s) that most closely reflects the nature of the submission:

Is the submission industry-sponsored in any way?

No


Description of submission


Aim

A pulmonary rehabilitation scheme for patients suffering from Chronic Obstructive Pulmonary Disease was launched in North East Lincolnshire in October 2005. The scheme involves COPD sufferers attending a 10 week programme of exercise and education designed to improve their overall quality of life. From the initial idea for the programme to suggestions for ongoing service improvements, patients have been at the heart of the scheme and involved in decision making. This patient involvement led to the idea of having Pulmonary Rehabilitation Buddies - sufferers of COPD who have been through the programme and now attend to offer peer support, assist with exercise and lead some of the education sessions.

Objectives

1. IMPROVE CONCORDANCE - Trying to engage breathless patients in exercise is often very challenging. One reason for this is that the fear of breathlessness is often a major limiting factor in terms of exercise and ADLs (Activities of Daily Living).The pulmonary rehabilitation buddies give patients belief. This is due to the fact that they have COPD and have managed to complete the course. Patients are able to ask questions of these former participants and get answers that they can relate to and more importantly believe. 2. EMOTIONAL SUPPORT SYSTEM - From anonymous feedback the course participants have identified that, although we have many professionals involved in providing the service, there were some issues and thoughts that they would not approach professionals with, but feel comfortable talking to the buddies about. Some examples have been continence issues (although we have a wonderful continence advisor) or intimacy issues and end of life issues. In terms of how life is with COPD, the buddies and the participants are the experts. 3. PERSONAL MOTIVATORS - Motivation happens through many overt and subtle ways. Potential participants can see the buddies and how in control of their disease/sypmtoms they are and hear how they have overcome panic attacks and shortness of breath and can now do activities that many of the participants would not even believe possible. In essence, the buddies give them hope and inspiration. On a more simple level, the buddies actively motivate through personal anecdotes and verbal and non-verbal encouragement.

Context

In North East Lincolnshire, there was no pulmonary rehabilitation service. A COPD Clinical Coordinator was employed to assess current provision and implement service development in line with NICE guidance and national and international guidelines. The initial step was to engage the potential service users. The local respiratory support group was consulted. The conclusions were that: *They did not want the service to be based at the hospital. *They required ample and appropriate parking. *They would like competent specialised staff. *They would prefer a relaxed atmosphere. *They wanted one-to-one tuition, ideally with the physiotherapist. Obviously, the last two are very difficult to provide. We decided to think outside the current parameters and came up with the pulmonary rehabilitation buddies. The group decided that it was important, in terms of creating a feeling of a safe environment, that members of staff and the buddies wear uniforms. All buddies sign confidentiality documentation and have CRB (Criminal Records Bureau) checks. All documentation was formulated in partnership and educational content and style of delivery tailored by the buddies and participants. It was decided that some of the sessions for the pulmonary rehabilitation programme should be led by a buddy. Interestingly, it was decided that they wanted to be referred to as 'patients' and that this should not be thought of as a negative. It was experience they had gained being a patient, which they brought to the table and should be respected as a professional qualification would be. As they said, we should be equal partners.

Methods

1. Endurance Shuttle Walk Test results increased on average from 198 metres walked pre Pulmonary Rehabilitation to 779 metres post. (more than ten times the clinically significant increase in distance walked). 2. Chronic Respiratory Disease Questionnaire results: *Dyspnoea - average increase of 1.68. *Fatigue - average increase of 1.45. *Emotional Function - average increase of 1.62. *Mastery - average increase of 1.33. (0.5 = clinically significant effect) Cost savings per patient completing the course is 2618.47.

Results and evaluation

*Pre and post programme testing, including endurance and incremental shuttle walk tests. *Patient's performance with walking, arm pully, pedal bike, therabands, step ups/sit to stands, arm bikes, etc., is recorded for each session and then targets for the next session are revised based on performance and feedback of borg breathlessness scores in each type of exercise. *Anonymous feedback/comments form. *Chronic Respiratory Disease Questionnaire completed pre and post programme. * Visual dispnea Analog Scale. *Patient sets themselves a personal goal, something they are unable to do prior to commencing the programme, e.g. that they will be able to walk their dog a certain distance by the end of the programme or have a day out.

Key learning points

Equal partnership between health professionals and patients is needed in order to effectively tailor the services. Psychosocial factors are important and can be designed into new services and this should begin from concept. A true patient-led NHS is possible and achievable. In terms of this process, user groups of services should be given information and asked to create services that truly meet their needs and it is the job of the NHS to try to meet these needs. In essence rather than us (the NHS) giving them (the patients) the option to choose, they should give us options/challanges to meet. In this way we can create a service that truly meets the users' needs and not a service that we think should meet their needs. Some aspects of learning can only be learnt from experience and in this case, no amount of teaching can allow someone to know what it feels like to have a breathing difficulty and to know that this is going to be with them for the rest of their life. This means that some aspects of our service can definitely only be delivered by sufferers. The reverse of this is that it should also be noted that the volunteers have commented that their work has given them a new lease of life. In essence, instead of waking up in the morning thinking about their disease, they are concerned with who they are going to help that day. In this way, this is a win-win scenario.



This submission won the 2007 Shared Learning Award.

View the supporting material

Contact Details

Name:Pamela Hancock
Job Title:COPD Lead
Organisation:North East Lincolnshire Care Trust Plus
Address:Hope Street Clinic, Hope Street
Town:Grimsby
County:North East Lincs
Postcode:DN32 7QL
Phone:01472 313422
Email:Pam.Hancock@nelctp.nhs.uk
Fax:01472 313537

 

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This page was last updated: 09 October 2007

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Accessibility | Cymraeg | Freedom of information | Vision Impaired | Contact Us | Glossary | Data protection | Copyright | Disclaimer | Terms and conditions

Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.