Kirsty Maguire

Kirsty Maguire - Advanced Speech and Language Therapist -Community Neuro Rehabilitation Team Brighton General Hospital

 

The collaboration between the Speech and Language Therapy (SLT) service in Brighton & Hove and Say Aphasia works exceptionally well. It has been established since the charity’s inception because it was the founding group. Over the years, through an excellent working partnership between SLTs and Say Aphasia, the group has gone from strength to strength and is always well attended. 

Aphasia rehabilitation provided by the NHS is time-limited, yet aphasia is a chronic condition. Without the ongoing support of Say Aphasia, many people would feel deserted and socially isolated when their therapy ends.

In Brighton and Hove, intensive aphasia rehabilitation typically lasts around four months. After this period, further NHS input may be offered, but it is less frequent and less intensive. Say Aphasia therefore provides a vital lifeline—a place where people can continue to practise their communication skills, generalise strategies learned in therapy, and rebuild confidence in a safe, friendly environment.

I feel comforted that I can refer people to the group, knowing that they will continue to receive support and many patients have told me that they feel safe and reassured that they won’t be alone.

Aphasia profoundly affects identity, relationships, and emotional wellbeing. People living with aphasia experience a 62% risk of depression one-year post-stroke, compared with 33% in non-aphasic stroke survivors. Depression following stroke is linked with poorer rehabilitation outcomes, greater carer strain, increased healthcare use, and higher mortality. When individuals can no longer communicate as before or return to paid employment due to reading, writing, and speech difficulties, the financial and emotional strain on families can be enormous. Free, accessible peer-led support such as Say Aphasia is therefore essential, particularly given the impact of reduced income and the additional costs associated with disability.

While Say Aphasia is not a therapy service, it complements and extends the work carried out by SLTs. The charity’s peer-support groups offer something no trained professional can replicate. Frequently, I hear patients, and their families say that the groups offer a sense of shared understanding, humour, and mutual encouragement. From many conversations, I have sensed that many members feel less socially isolated, accepted and empowered to take an active role in their recovery.

Say Aphasia’s model represents best practice in user involvement. It supports people with lived experience of aphasia to shape services, develop skills, and contribute to research and evaluation. Patients have reported feeling more confident in their communication and some have gone on to provide talks and presentations at conferences to share their story and the importance of peer support to them.

Family members have shared that they appreciate the respite and opportunity to meet other carers. One carer reported that it creates a community of understanding around an often-misunderstood condition.

In my professional view, Say Aphasia fills a significant gap in the recovery pathway. It provides an innovative, low-cost, and sustainable model of ongoing support that exemplifies effective partnership between the NHS and the voluntary sector. The charity ensures that people with aphasia are not left behind but instead are empowered to live well and influence the services that support them. I attend the local group as often as I am able. The laughter is infectious, and it is always the highlight of my week.

 

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