Community health services adult engagement report

Introduction 

Disability Assist is a user-led organisation, run and controlled by disabled people for disabled people; the majority of staff and all Trustees have a physical disability and we consider ourselves to be 'experts by experience'. We are proud to be disabled people, supporting disabled people. Not only are we existing as an organisation but growing and providing real opportunities, challenging  traditionally low expectations and demonstrating that we can succeed.  

Our vision is for a world where disabled people are enabled to live as independently as possible, with the same access to the opportunities enjoyed by their non-disabled peers and are included in  society as full and equal citizens.  

We work with disabled people in Kent to provide peer support, information, advice and guidance, community advocacy and benefits support. We champion the voice of disabled people. We encourage disabled people to have choice and control to live as active members of society. 

Methodology 

We shared the information and online survey through our established communication channels. We carried out 18 one-to-one interviews, face-to-face of over the phone. All interviewees have a 
physical disability and/or a long term disabling health condition. 

Results 

• 19 interviewees; 10 female & 9 male; all but one White British (White European)
• 10 Physical disability
• 6 long-term health condition
• 3 Physical disability & long-term health condition 

The ages of participants are shown below:

18-30 years 

1

31-45 years

5

46-60 years

4

61-75 years

6

Over 75 years

3

Which community health services have you used recently? 

The majority of interviewees have used multiple services; which is not surprising considering our demographic. All interviewees have a physical disability and/or long term disabling health  condition. A number of interviewees are self funding services, such as podiatry and physiotherapy. 

• Urgent community response and hospital at home [1]    
• Integrated discharge teams [4]      
• Intermediate care (short term care) [3]    
• Musculoskeletal (MSK) physiotherapy services and community orthopaedic [4] 
• Podiatry [3] 
• Speech and Language Therapy Services (SALT) [3] 
• Continence care/ Continence management services [2] 
• Community Respiratory [1]    
• Diabetes [1]    
• Nutrition and dietetics [3]     
• Community nursing [3]     
• Tissue viability [2]   
• Health and social care coordinators and health trainers [4] 
• Chronic pain [3] 
• Communication and Assistive Technology (CAT) Service [2]    
• Community Stroke services [1]   

What did you think about the services overall? What, if anything, made your experiences good?  

The overriding sense from the interviewees was that services are generally good, but variable. Experiences appeared to be quite dependent on the practitioner or staff member they saw. People  often find it difficult to arrange appointments, and feel that services could be better joined up.

It is worth noting that a significant number of interviewees do not understand the distinction between General Practice, Community Health, Acute services and sometime even Adult Social Care.  

“Overall some good, some not so good. Vary dramatically - very good, especially when they respond to and acknowledge you as a person. Dependent on the member of staff, and what they can  offer/what's available. Sometimes staff have a limited understanding of my condition and as a result don't communicate effectively. I am an intelligent adult and sometimes I feel that staff do not  have the time or patience to communicate with me.” 

“My experience of services has been dependent on the understanding and supportiveness of individual staff. Some are very matter of fact (wham bam thank you mam) - no empathy or 
understanding; treat me like an idiot. I felt fobbed off.” 

What, if anything, could have been improved?  

The key suggestions include better joined up care across Health and Care, ensuring that staff have sufficient training, time and aptitude to provide person-centred support that respects the needs of 
the individual. 

“More training - make sure new staff understand that if people have been with the service for a  long time they don't need to start from the beginning every time. Need support quickly, long waiting 
times are not acceptable. Not good being wet all the time. What training do the Managers get?” 

“Make sure all the different services are working together to help people when they go home for a newly diagnosed person. Make sure everything is ready and working. Lots of people stuck in hospital 
because things are not ready.” 

Do you have any views on travelling to community health services appointments -anything which could be improved?  

Transport elicited strong views amongst our interviewees, although not always directly in relation to community health services appointments. The hospital transport service (delivered by G4S) is a 
major concern, with people noting the lack of accessible vehicles for people who have to travel on a stretcher, their inability to meet stated timings and the lack of understanding and empathy with  
patients.  

Generally, people do not mind travelling to community health services appointments, but this is easier for those with their own, or access to private transport. People commented on the 
need for sufficient Blue Badge parking bays and identified the time and organisation it takes some people to access external venues.  

“Traveling still a problem with community transport, better if the service can come to me.”  

“If being told to drink lots of fluids before your appointment, need to ensure people get to the hospital urgently. Drives won't stop if someone needs to use the toilet.” 
“A lot could be improved. I have my own vehicle but have to find a driver if my PA is not available. I have to organise to the n'th degree.. not simple and is expensive.” 
“I won't use hospital transport… they put a DNR on you without asking.” 

Priorities for community health services: working with healthcare providers we have developed a list of nine principles for the improvement of community services- can you tell us the top three 
which matter most to you? Why?  

On the whole the interviewees thought that all the priorities are important. 

“ Really difficult - are all important. Services are about my life, and I want to participate actively. I try to live every day beyond my condition… having lived with this condition since 17 years I am the 
expert in my condition. I am an expert in my body.” 

Is there anything missing from our list of nine priorities? Why?  

People told us that is it crucial that services are person-centred 

“All services should be more person centred and focus on involving me actively in my care. Lack of understanding about my specific condition.” 

“Something about access and a recognition that everyone is different with different capacity and needs - person centred care. You have a learning disability nurse - but not one for physical disability - I think is totally wrong.” 

“All my needs, my lifestyle and all the things that are important to me are taken into consideration. Like my husband and his needs.” 

“I want to be listened to and treated like an adult.” 

“Need to be better at working in a joined up way - across community, Social Care, mental health 
and local authorities.” 

“Use technology better so that resources can be directed to people who can't use it or need face-to face support.” 

Recommendations 

Participants want to experience more joined up care, which is person-centred and meets their particular needs. Appointments need to be easer to arrange, with needs taken into consideration. 

The most common concerns were not feeling heard or feeling actively involved in the care. The challenges with transport impact on a person's experience of the whole service.  

Conclusion 

People with a disability or long term health condition are not a homogeneous group; they have different care needs and face different challenges. Frequently they are using multiple services and  seeing numerous practitioners. It is vital that care is joined up so they are not repeating themselves time and again. It is imperative that disabled people are treated with dignity and respect and are 
enabled to take control of their care.