"Stories from PfI Sheffield disabled peoples’ service user group"

I am a member of the Care Opinion team where part of my work is about engaging with people on our feedback site, including: service users; carers; commissioners; and providers. It just so happens I am also a disabled person who uses adult social care services.

In Sheffield I have been working with different user groups and individuals who use social care. One of these groups, Partners for Inclusion (PfI) offered to help me run a service user engagement workshop.

PfI are a user led disability consultation group who work in partnership with the local authority and local health authorities in Sheffield. The group mostly works with people with a physical impairment and normally deal with issues relating to this user group. However, for the purposes of this wider engagement event we jointly sought to cover all disabled people and the workshop was attended by people with learning difficulties, people with mental health problems, people with sensory impairment and those with other impairments.

There were 20 individuals attending the workshop, some of whom wanted to take their story leaflets with them and/or use the website to feedback in their own time. Collectively they agreed to collect their feedback as a group and post anonymously onto Care Opinion in order to provide feedback to commissioners and providers.

One individual with visual impairment spoke about the lack of training or skills in care homes for older people where, as someone with a sight impairment and Disability Equality Trainer they talked about the way they were left to find their own way around one care home, with whom they were working with. As an example, they told the group, “One member of staff directed me to the elevator by saying it’s down there on the left”, instead of being guided there by a staff member who, given the group of clients they were working with, should have had training in how to escort people with visual impairment”.

Another carer also spoke about their aunt’s recent experience with her GP where, following a call out to her aunt there had been confusion about the follow up action where the GP’s call had not been logged and her Aunt had stopped taking her medication. Despite being confident that the GP did call and gave of some advice to their Aunty, they had misgivings about allowing their Aunty’s ability to undertake directions without the aid of help in recording instructions for medication. As their Aunty’s primary carer they said it is vital they are included in all decisions like this.

The workshop had present some individuals who wanted to talk about the lack of advocacy available to people with learning difficulties. All of them were particularly eager to pursue issues with A&E and asked if Patient Opinion could help.

Hospital signage proved problematic for some but by far the biggest issue they said was around the way people with learning difficulties are sometimes treated. Many spoke about this issue and we recorded one example where someone goes into A&E finds it difficult to talk to others when under pressure – where everyone is worried, these worries can be hugely upsetting to someone with a significant learning difficulty.

Many people said GPs should be more active with someone who has a learning difficulty and be prescriptive and be more predictive about the treatment and help someone with learning difficulty needs. Make sure people have a ‘Hospital Passport’ but people with learning difficulties want to see more evidence of how cynical staff are trained to deal with people with learning difficulties in a non-patronising and efficient manner just like everyone else.

One participant who submitted their story said he was a personal budget holder through (SDS), a service user with Sheffield City Council. He said he got to choose his agency by interviewing the staff of his agency. He said he was even more impressed when they then made sure he got to interview and get introduced to care staff who would be his nominated carers. He told Care Opinion this also includes an introduction to any new carers that may be introduced to him when his usual carers are on holidays and/or staff sickness. Another participant spoke about his disappointment in the care he received from his agency.

During the workshop we took feedback from people who spoke highly about the Neurological Outreach Team Develop. One individual felt they received a great service from NES service and experienced good joined up working with Neurology department and social care services. One individual suggested access to social services should be more universal. Everyone agreed with this and although the consensus was that this was a difficult time for funding services – everyone felt those who needed care should receive it.

I would like to thank those who attended the workshop, which proved to gather great feedback from which many commissioners and providers might like to respond. Care Opinion is particularly grateful to PfI for their co-hosting, to Healthwatch Sheffield for their contribution and support for those taking part. Also thanks to the staff at The Circle for being so responsive to the needs of their client group. Thanks!