Experiences of social care in the health and care experience survey 2015/16: analysis of free-text comments

Chapter 2: Access

Summary

Comments highlight a range of factors that influence access to the support which is needed to meet social care needs and outcomes. Participants expressed the importance of receiving accessible information and advice at the right time. Responses highlighted concerns in relation to eligibility criteria and the availability of services.

Access to care was a prominent theme within the comments. Responses highlight the need for timely, person-centred support as opposed to resource-led assessments and interventions. This section provides an overview of the comments relating to:

• Information and advice
• Availability and eligibility
• Location
• Time

Information and advice

The social care landscape is complex. Public, private, and independent sector organisations provide social care and have different remits, funding arrangements, and eligibility criteria. Information and advice about local supports and referral pathways are therefore important in influencing access to services.

Responses highlighted the need for accurate information and advice to be provided at the right time, in an accessible format. Positive comments demonstrated how signposting to local support organisations helped people to access services, and less positive comments articulated the frustrations some people experienced when trying to access support, particularly when information and advice are absent.

"Have just had a visit from care advisors. Had good advice about where to obtain aids to help with my ability to use my hands."

"There are a lot of help/care/support services for my condition, yet it is only if you know/ask about them you get referred - so if no one tells you about them, then you are forgotten."

Responses also demonstrate the requirement for information about symptoms, management options, and supports, following a medical diagnosis. Likewise, unpaid carers require information and advice about how best to provide care and support. This is important in helping people to cope with everyday adjustments required post-diagnosis. People identified the need for holistic information, which includes a range of support options. The following quote is typical of the types of comments people made in relation to this.

"I cared for my relative, who has dementia, for five years and found the service very poor. No information was given to me about my relative's entitlements - treatments etc. We were told by the consultant she had dementia then bustled out the door with no information on what could or couldn't be done for her. There should be a combined service with doctors and social workers - giving you a complete knowledge of illness care and entitlements."

Availability and eligibility

Comments demonstrated specific concerns about the availability of services. These focused on differences in expectations between service users and professionals, and restrictions imposed by eligibility criteria. Although a national eligibility framework exists within Scotland, local authorities have the discretion to interpret and determine how needs should be met (Scottish Government, 2014).

Positive comments, like the example below, focused on receiving timely supports that are responsive to need.

"I had excellent care from s/w to access the help I need to get a grant for a disabled shower. I received visits and assistance from them when I needed increased care following a fall. I have a good care package with council care staff who are always helpful."

Conversely, negative responses focused on specific issues with the assessment process. Comments described resource constraints and bureaucratic processes,which led to people feeling that they had to fit in with service providers rather than addressing individual needs and preferences.

"It was driven by administrative priorities and not patient needs."

"Asked if I could get shower as problems with health, was given a bath seat that can help me in and out of bath, but doesn't solve my main problems. It all comes down to money."

The responses reveal differences between the expectations of service users and professionals in relation to support needs.

"When my late spouse was poorly he wanted help to bathe and needed appliances that made it easier to manage. The OT [occupational therapist] who came from a private care firm hired by the Council was not helpful nor was the person on the phone of their office - even said that they didn't consider bathing or showering a priority for an elderly person."

"I was sent home from hospital without any care or help when I had broken a bone in my back. I was told not to go into the shower until I had help, which was refused as I am under 65."

Location

Social care is provided at local authority level. This results in differences in the types and quality of service availability. Responses highlighted that geographical location affects access to services and the delivery of care, especially in rural communities. The comments indicate that this is exacerbated by staff shortages, particularly in remote areas, as well as people's ability to access services.

"Nothing is available for rural areas. All support networks are miles from home and I cannot drive very often. More transport support is needed."

"The [island removed] staff do their best, but we need someone on [island removed]. If there's no ferry, there's no help, no food."

Time

A substantial number of comments referred to time. Positive ones focused on quick response times in getting an assessment and the speediness of implementation following assessment. In particular, there was an emphasis on receiving timely installation of equipment to support individuals to remain at home and maintain their independence.

"I have had to access care and support for my relative who lives with me, services were put in place quickly."

"I got excellent care when I came out of hospital… When I moved here my spouse got in touch with [area removed] Council and they were very helpful. I needed bath aids and hand rails outside. They provided them within 3 days, very good service."

In contrast, negative comments described a lack of responsiveness and lengthy implementation times, highlighting the impact this has on quality of life and the distressing consequences of slow implementation.

"Spouse seriously ill and the social care offered to her was deplorable. Spouse bed bound and as a "priority" case was told they had to wait weeks to be given an answer as to what care they were entitled to. Spouse died before any help could be given."

"My elderly relative had a urine infection and it caused them to be unable to stand, therefore unable to go to a toilet or commode. It took several days for incontinence pads for the bed to arrive. Bed ruined and skin damaged by urine burns. Takes too long for requested help to install a handrail for stairs."

However, the comments also show that people are often happy with support once it is in place, although they may be dissatisfied with implementation times.

"… it took almost one year to [get] the care support set up. Since it has been in operation it has been good but we could have done with it earlier."

"When I eventually received physio through [project] it was good, but too little too late. I was left in a crisis situation with no support and difficulties accessing services, for the first crucial stressful 2 weeks after hospital discharge."