We asked Carers "What three changes to services would have a positive impact on your caring role?".
29 Carers shared the changes they want to see to services in MK.
Click here to view the survey.
The data has been collated and themed. The key themes are highlighted below, with the most common theme listed first.
More respite opportunities (13)
Respondents noted the need for respite opportunities to be more readily available. One respondent wrote “There is never any mention form anyone regarding this”. The key points raised were:
- The need for more free respite opportunities
- Access to a register of trained/vetted people who can provide respite care that is affordable
- More information about who is eligible to access respite opportunities
“Caring can be very isolating and you rarely have any social time or me time”
“The hours of support I receive enable me to work, when I get home from work, I resume my caring duties. I am exhausted all the time”
More information for Carers about the support available for them (11)
Respondents recognised the need for more clear information for Carers about how to access support. Respondents highlighted wanting more information on the following:
- Carers Rights
- The roles and responsibilities of key agencies (HPs, hospitals, social services, community services, care homes, DWP)
- List of practical support services at affordable prices (e.g. help with laundry/cleaning, paperwork)
- Who to contact when equipment needs to be serviced
Support packages should be clearly defined to that carers can be aware of what support is available.
“Nobody ever approaches you to tell you what support you can get. You ALWAYS have to go and find out for yourself. And when you try to search for information it is confusing”
Mental Health support for the cared for (10)
Respondents noted that a lack of Mental Health support for the cared for (children and adults) was making the caring role increasingly difficult, putting unnecessary stress on the carer.
Respondents recognised a need for basic training for Carers in how to support someone with mental health issues.
Improvements at GP Surgeries (9)
The following suggestions for improvement were made:
- Improved system for booking appointments
- “Be able to see the same GP each time rather than seeing a different GP every time and going over what is wrong each time”. Continuity of Care would relieve pressure on the Carer to explain everything every time.
- Ensure that named carers are copied into appointment letters, especially if they do not live at the same address as the cared for
- Make the process of getting flu jabs/B12 injections etc. easier
- Better understanding of the cared for’s needs (E.g. for heard of hearing patients doctors must talk clearly and facing patient)
- Doctors should read notes before seeing patients. When Carers have provided information for a 1-page profile, GPs should act on what the Carer has written
Professionals need to listen to Carers more (7)
Respondents shared that they do not always feel listened to by professionals, in relation to their knowledge/expertise of the cared for.
The following points were noted:
- some services do not want to talk to the carer, even when permission has been given. E.g. GPs calling the cared for to tell them about test results when the cared for does not have the capacity to understand this information
- Carers should be involved in the decision-making process from the start
- “Include carers in discussions, understand that they may need to stay with the patient. Allow for carers to give them information which the cared for may forget or misrepresent due to mental health/incapacity”
- “The Carers know the person best as they are with them all the time”
Records/Communications between services (5)
Departments/services have to be told the same information multiple times, particularly around records of the named Carer. This can be distressing for the cared for, who must repeatedly have it explained, in front of them, why they are unable to receive their own letters etc.
Access to services (5)
Quicker access to services for the cared for, would have a positive impact on carers. Respondents were concerned that currently access to services depends on those that shout the loudest.
Specific services mentioned:
- Occupational therapy
- Wider eligibility criteria for a mobility car
- Services such as youth clubs and out-of-school care should be accessible to disabled kids (including autistic and other neurological differences, not just wheelchair user)
Recognising physical/emotional/mental needs of carers (4)
Carers made the following comments:
- “I also need care and support too”
- “we were offered no support while our son was in critical care”
- “as a carer I don’t feel listened to or supported at all and now my own mental health is suffering”
- “Listen to the Carers about their own needs as well as the person they care for”
More support groups/social meetups for carers (3)
Carers expressed a desire to have more social opportunities
- “I want to talk to someone who isn’t trying to ‘solve’ my problems – someone to chat to without lots of advice that needs to be followed up on”
- “A talk café where Carers can go just for a chat with other Carers and service providers at any time. Sometimes all we need is to know we are not alone. Phone calls do not always help. Carers need to get our of their home sometimes”
Support groups are often held during working hours, so Carers are unable to attend.
Other suggestions for improvement:
- Sign Language Interpreter available to attend appointments so that the carer doesn’t have to attend with the cared for if they can’t/don’t want to.
- Establish the role of keyworkers for each carer as a source of advice and information for carers, and initiator of referrals, with responsibility for an annual review and care plan
- Care packages - proper handover when somebody leaves a department, so that the new person handling the case knows exactly what has gone on before
- Support during school holidays (without costing money)
- All prescriptions for long-term medication being in the same size packs. Keeping on top of medicines that have to be re-ordered a 28-day, 30-day, 50-day and 60-day intervals is a nightmare
- Carers Leave should be more accessible for taking patients to and from medical appointments, so Carers do not have to use up Annual Leave
- Increase in Carers Allowance
Quotes from Carers:
“it is difficult because there are no named professionals/officers to call to account”
“In summary, if an individual is prepared to take on the responsibility of a Carer, the professionals in MK will dump and run! They are a professional disgrace”
“I am just left to get on with it, so I don’t know if I’m doing things right”
This data is being shared with the Carers Strategic Partnership.