South London Carers Speak out!

South London Carers Meeting:

As part of celebrating National Carers week, SLAM and Patient Opinion were delighted to welcome Carers from the area to take part in a workshop focussing on stories and feedback about local services.  Carers took part in a lively discussion sharing feedback about their experiences of the care and treatment of their loved ones.  The group agreed that comments could be collected in a blog to go onto the Patient Opinion and SLAM websites.  Here is what the group had to say:  

Care Homes:

• There were strong concerns expressed for those residents who have no family to visit to ensure that each individual was being fed and had nutritional meals.  One relative spoke of a home that did not allow visitors during mealtimes saying that felt like an important time to visit. This is even a time when a home might welcome a relative or carer, helping ensure that residents were properly fed.
• Building a strong relationship between Care Home staff and family members was seen to be really important.  This enables families to help provide care and also help the care home staff to really understand the needs and personality of the resident by knowing who they are and their history.
• Part of the problem particularly for those from BME communities was that often residents were simply not offered the food they were used to and reflected their culture.  One carer asked us to imagine what it would be like to be offered food that you simply were not used to eating and did not like.
• Difficulties about choosing care homes was shared.  One relative said that it was the urine test.  If she smelt it as she walked in, that would put her off!!

Home Care:

• One carer expressed commonly held concerns about the value given to paid carers.  Concerns centred around lack of training and very low wages resulting in low motivation and fast turnaround in staff.  Also people felt that paid staff were not given enough attention.  They were not listened to, in terms of planning care when often they are the ones who know the person best.
• There were concerns also about systems for quality checking in terms of how adequately people’s needs were being met.

Hospital Care:

• Although some people had some quite critical comments about some wards, others talked about wards where good practice, and maintaining a healthy therapeutic environment was the norm.  So it was impossible to generalise.  What was clear was that it was hard to replicate the wards that maintained a high standard, there was a feeling of hit and miss about services.
• A couple of people had had very good experiences of hospice care and talked about the marked difference in quality between that of hospice care and some hospital wards and care homes.  Question was asked how that good practice can be replicated elsewhere.
• There were concerns about the amount of staff cover on wards, so for the most part it was felt that staff were hard working, but often there was not enough cover on wards where patients often had high needs.  For example a couple of carers had experience of patients not able to reach drinks or food that was left for them at different hospitals. Staff from SLAM point out that on their wards, patients eat collectively and generally are up and about so can ask for a drink at any time from Clinical Support Workers.
• It was felt that complaints did not lead to change and took a long time to respond to. 

Carers Group:

• The group generated some lively discussion.  Sharing experiences and having a collective voice was seen to be a powerful support for everyone.
• They all felt that coming to a group like this is a way of both not feeling alone but also accessing much needed information.  Everyone felt that there was more information for people than ever but sometimes hard to know where exactly to go for just the right guidance.  For example the Alzheimers Society on their site has some great information for people needing support see here.
• Also its hard to keep up with the changing legislation for example the Care Act : “'The new Care Act 2014 represents a step in the right direction, giving people living with dementia and their carers a better understanding of what they are entitled to and a positive change in the way people are cared for.” As described also on the Alzheimers Society website:
• Finally the group, agreed that the ability to feedback experiences on a public website anonymously was a good way to give carers a voice.  It was also a good way to hold services to account and try to promote change and learning within these all important services.