USER INVOLVEMENT (2)

A clear focus
Focus groups of people with communication difficulties following a stroke have enabled Anna Hayes and colleagues to make a successful case for more staff and introduce service improvements such as more group work, a new goal setting system and aphasia-friendly information.
l-r, Amy and Mariela

here has been a big emphasis within health and social care policy on listening to the views of users and carers about the services they need and want (DH, 2000; DH, 2001). This is particularly important for those whose voices are often least heard (DH, 2006, p.157). In our work with stroke we have frequently listened to stories from clients who feel frustrated, angry and lacking control over their healthcare. Such people typically have a limited voice and as a result are frequently not involved in decision-making (Pound et al., 2000). This was the real motivation for our user involvement project. We hoped that by inviting clients to have their voice heard they would gain a sense of control and significance, and we would gain the valuable input of an often under-represented group. The East Sussex Speech and Language Therapy Service for Adults covers a large geographical area and comprises of 22 therapists, one assistant and three administration and clerical staff. We provide an assessment, diagnosis, treatment and management service for clients aged over 16 who have acquired communication and / or swallowing problems. Our project aimed to seek the views of people with communication difficulty following stroke in order to: Better understand their needs and the effects of our service on them Harmonise best practice Ensure effective use of resources Direct future planning and development of the service Help to inform our negotiations with purchasers of the service. We decided to use focus groups as we felt that even an aphasia-friendly questionnaire might deter communication-impaired people from participating, and one-to-one interviews would place impractical demands on time and resources. We thought that by using focus groups with skilled facilitation we could obtain the views of a significant number of people, including those with severe communication difficulties. Users of the service were involved at the planning stage. Members of our speech and language therapy self-help group contributed ideas and opinions regarding the design of the focus groups, questions to be asked and practicalities. We held two events, giving participants a choice of neutral and non-clinical venues. We 10

invited current users of the service and people who had been discharged within the last year. We also invited one carer / relative per client to give their views. In total we asked 70 service users and 16 planned of them to come, with 2 cancellations on the day. This represented a 20 per cent turnout, which we felt was good. Eight relatives / carers also attended. Inspiration from the work done at Connect helped us to design the sessions so that participants would understand their purpose and be able to contribute as meaningfully as possible. We obtained their views by careful use of supporting materials and skilled facilitation using the principles and techniques of supported conversation for adults with aphasia (Kagan, 1995). We split participants into small groups of no more than three people, depending on the severity of their communication disorder. Each small group was facilitated by a speech and language therapist. Relatives and carers were in a single group, again facilitated by a speech and language therapist, but separate from the participants with communication disorders as we thought their perspective and views might be different. Each event also had a speech and language therapy student who was not involved in facilitation acting as a note-taker.

Reference point

We decided to use the patient journey through the speech and language therapy service as a reference point for participants feedback. We represented this visually in the form of a picture (figure 1). The journey was broken down into three sections: 1. Waiting period after referral, and initial assessment meeting 2. Therapy period 3. Leaving therapy (discharge). For each part of the journey, we asked clients and carers to reflect on: What was good / positive? What was less good / negative? What was missing / suggestions? We decided to keep the style of questioning as open as possible to encourage participants to focus on their own unique experiences of the speech and language therapy process. We felt that this would provide us with information that participants felt was important, which we thought might be quite different from our own perceived priorities. Consequently we found that

each session yielded a vast amount of narrative data. This was initially rather daunting but with the help of the audit department we analysed the data into themes. We were relieved and pleased to receive a lot of positive feedback. The vast majority of clients and carers had good experiences of the speech and language therapy process. Comments from clients included therapist helped an awful lot; enjoyed it; explained very well; gained confidence. Examples of comments from carers were (I) didnt expect such an excellent service; I got emotional support; (carers were) included right from the start. However, we were also pleased to see that clients and carers felt able to tell us about our weaknesses. The key areas where people had identified problems were: timely and accessible information, particularly regarding what to expect prompt and adequate access to therapy for communication disorders (by comparison to swallowing disorders) and adequate amount of therapy, including reduced opportunity to attend groups. Carers in particular told us that they felt that nursing staff required more education about swallowing and communication problems. The main concern after discharge was loss of contact and support, and interestingly this was also the main anxiety for clients who had not yet been discharged. We noticed that different people had had contrasting experiences of the same thing. For example for access to information, compare the response full information about the recovery process with very difficult to get information. This might indicate inconsistencies in some areas of the speech and language therapy service, or suggest that we need to be more aware of different information needs and how people express them. We also noticed that several clients felt they had not received enough therapy, despite having had blocks of therapy for over two years. Whatever we may think about the benefits of longer-term input, there are limits on what we can offer. We hypothesised that being clearer about this at the outset of therapy, along with improving our negotiation of goals, might help some clients at least be more satisfied with the process and outcome.

Our series aims to show that user involvement can be transformational for clients, therapists and services put into practice at many different levels a powerful tool for influencing commissioners

SPEECH & LANGUAGE THERAPY IN PRACTICE autumn 2008

USER INVOLVEMENT (2)

User involvement whats your experience? Let us know at the Autumn 08 forum, http://members. speechmag.com/forum/.
Figure 1 Visual representation of the patient journey

As a result of the focus groups we have taken steps to address the concerns that were raised, and to ensure that we build on and harmonise good practice across the service: 1. We have secured funding for a therapist to provide a service to inpatients with a communication disorder, and also funding for an assistant. We hope this will allow more groups, and enable us to provide more support for clients both as they prepare for discharge and after they have been discharged. 2. We have reviewed goal-setting and outcome measurement across the service, and developed a new system to ensure best practice. 3. All newly referred out-patients are sent a letter on receipt of referral to the speech and language therapy service, giving an indication of the likely waiting time. 4. A series of aphasia-friendly information leaflets has been created with input from clients. One is sent with the initial appointment letter explaining what to expect of therapy, whilst the others are given during sessions and contain information about communication and swallowing difficulties. 5. We have made efforts to provide more opportunities for group work, for instance Total Communication and SPPARC (Lock et al., 2001), although this has been limited by a significant proportion of therapists being simultaneously off on maternity leave / a career break. Therapists are also investigating setting up a new self-help group to replace previous groups which have come to a close. 6. We have produced communication training packs for the team to roll out to nursing and other professionals to improve their knowledge and skills with our clients. We are determined to keep user involvement at the top of our agenda. The speech and language therapy service has recently completed a multidisciplinary consultation event for people with Parkinsons disease, and we are investigating other models for user involvement. Events such as these will be useful commissioning tools

Steps taken

in the context of the ever increasing need to convince commissioners that we are providing services that our clients need and want. Whilst this user involvement exercise required a considerable amount of work, it has been hugely worthwhile. There was a real buzz at the focus group events, and all the therapists involved found the experience both stimulating and rewarding. However, our main incentive for this project was to help make our clients feel valued and involved in their healthcare. The feedback that we received certainly implied that we achieved this. Some clients told us they had been worried prior to the event that they might have been out of their depth, but had been relieved to find they were able to express everything they wanted to. Clients said they had been pleased to have the opportunity to have their say. We got a strong feeling that clients had felt listened to and for one client in particular the event was the best thing that has happened since my stroke. Anna Hayes is a speech and language therapist with the East Sussex Speech & Language Therapy Service for Adults. Anna is on a career break but you can contact Anita Smith, Regional Professional Lead ESSALTSA, Speech and Language Therapy Dept, level 1, Conquest Hospital, The Ridge, St Leonards on Sea, TN37 7RD. 01424 755470 ext 8639, e-mail anita.smith@esht.nhs.uk.

End of life competence

news extra

The End of Life Care Strategy for England says that all allied health professionals need core competences to deal with people who are dying or who have been diagnosed with an incurable illness. The strategy says that a basic knowledge and awareness of end of life care needs to run through all undergraduate training to prepare staff for this eventuality and that regulators such as the Health Professions Council will wish to consider how to ensure that the skills required for effective and sensitive care are sustained and kept up to date throughout professional careers. While the strategy acknowledges that many of standards for proficiency, education and training and professional development are applicable to end of life care, this is not explicit. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277

Parkinsons and mental health

Acknowledgements

With thanks to all the therapists who helped in the running of the focus groups, and to Emma Eaton and Mary Warrington for their helpful advice during the writing of this article.

References

Department of Health (2000) The NHS Plan: a plan for investment, a plan for reform. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4002960 (Accessed 30 June 2008). Department of Health (2001) National Service Framework for Older People. Available at: http:// www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/ DH_4003066 (Accessed 30 June 2008). Department of Health (2006) Our health our care our say: a new direction for community services. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127453 (Accessed 25 July 2008). Kagan, A. (1995) Revealing the competence of aphasic adults through conversation: a challenge to health professionals, Topics in Stroke Rehabilitation 2(1), pp.15-28. Lock, S., Wilkinson, R. & Bryan, K. (2001) Supporting Partners of People with Aphasia in Relationships and Conversations (SPPARC). Milton Keynes: Speechmark. Pound, C., Parr, S., Lindsey, J. & Woolf, C. (2000) Beyond Aphasia: Therapies for Living with Communication Disability. Milton Keynes: Speechmark.

The Parkinsons Disease Society is to offer training in the mental health issues associated with Parkinsons to health and social care professionals. Of the 470 professionals who responded to an online questionnaire designed to assess current levels of knowledge and future training needs, 17 were speech and language therapists. The Society says that, while 12 of them had received training around Parkinsons, only 2 had included mental health aspects of the condition. It adds that only one third of the speech and language therapists stated they felt confident in their ability to identify the mental health symptoms relating to Parkinsons. The specific training programme will be piloted from February 2009. Further information is available from Jackie Spencer, Mental Health Project Manager, e-mail jspencer@parkinsons. org.uk. A one day conference on 23 September has limited Parkinsons Disease Society bursaries available for professionals (see events). www.parkinsons.org.uk

Dementia development

Resources

Connect, the communication disability network SLTP - www.ukconnect.org

The company behind a 5 million development in Southport say it will be an international service centre of excellence for people with dementia. Birch Abbey care home already specialises in dementia care and support but will more than triple in size under the plans by owners Melton Health Care Limited. Its chief executive Dan Lingard, a former software developer, is also behind Birch Abbeys MyAmego specialist dementia patient monitoring system. Technology also plays a part in the expansion proposals, with a camera being added to the chicken run in theliving sensory gardento provide a talking point for people who are less mobile. Dan Lingard says, We are designing in - from scratch - technology, accommodation, entertainment, activity, social interaction and a broad range of care services and features that have never been seen together under one roof in the care industry. But, crucially, this is not just about a building - it is about an attitude to dementia care, service and support. www.myamego.co.uk

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