As part of our "I like it when..." series, we are sharing what our community of carers likes to see, hear and feel, from different services and from friends and family. Simple things that can make a big difference to our day to day lives.
Nine things carers love (or would love) their GP to do
Being an unpaid carer can be emotionally and physically exhausting, but there are some simple things our GPs can do to help.
To make us feel heard, improve our own health outcomes, minimise our logistical challenges, reduce our exasperation, and simply improve our day-to-day lives.
What follows are genuine comments shared by our own carer community.
Would it be helpful to share with your local surgery?
I like it when my GP...
1. Allows me to book with the GP I want and knows the whole picture
“I can book with the named Doctor, who knows our complicated medical history, so I don’t have to repeat myself and worry I’ve missed something.”
2. Makes me feel listened to
“I like it when my GP listens to me and gives me time to voice my concerns.”
3. Doesn't make me have to repeat myself
“Knows how stressful my caring role is, so reads through our notes, so I don't have to repeat why I am so stressed and tired.”
4. Is easy to contact and has a booking system that works flexibly around carers’ complex logistics
“Books me and my husband in for flu vaccination in the same slot.”
“Finally recognised all my daughters' medical visits needed to be at home.”
5. Has empathy. Is emotionally supportive and aware of the mental load on us.
“Understands when I’m struggling and listens and says she can understand why I’m finding things tough.”
6. Is proactive and keeps us in mind
“As carers, we leave ourselves and our health to the very last. Someone proactively checking in would be great - and supports me to take better care of myself. That support is priceless”
7. Registers us as a carer
“Registered me as a carer with ease and actually proactively called me to arrange this, so I could get my vaccines.”
8. Trusts us
“Knows that after 20 years of caring for my partner, I am something of an expert in their care.”
9. Offers longer appointments for carers
“Allows me to talk about all health concerns in one appointment. Not ‘one thing per appointment’.”
“Supports me with holistic care for myself - not just painkillers/sticking plasters - helping me get to the root cause of the problem and manage it.”
Ten things carers love (or would love) their friends and family to do
Being an unpaid carer can be emotionally and physically exhausting, but there are some simple things our friends and families can do to help.
To make us feel heard, improve our own health outcomes, minimise our logistical challenges, make us feel included, and simply improve our day.
Who would it be helpful to share this with?
I like it when my friends and family...
1. Ask us how we are feeling
“Ask how I'm feeling and if I need anything (as well as show interest in the person I care for).”
“Include me, ask how I’m feeling and sincerely want to know.”
2. Listen without judgement
“Listen without giving advice.”
“I like it when my friends give me the space to be myself, and talk about the things I’ve been through without judging or trying to sympathise with things they can’t understand.”
3. Don't forget us
“Please don’t disappear off the face of the earth!”
“Turn up for me, give me a hug, pursue me a bit when life is so crazy demanding that I seem to disappear.”
“Understand when we’ve made plans and I have to cancel at the last minute - but still keep on inviting me to the next get-together. Don’t give up on me.”
“Appreciate that I like to do stuff on my own with them (without the person I care for).”
4. Learn with us
“Takes the time to understand and adapt to my child's needs.”
“Takes time to learn my son's communication tools - Makaton and PECs and be brave enough to 'have a go'.”
5. Help us to take a small break
“Offer help and support - to get some sleep or just time to walk in silence.”
“When a friend says "I've got my eye on her" and gives me five minutes to switch off. (needs to be a very trusted friend who completely understands that you literally can't take your eyes off of her!).”
“Offer to sit with the person I care for or run errands so I can get a break - without me feeling judged”
6. Nourish us!
“Bring us food. Cooked meals are always welcome!”
“If nothing else, at least offer to make me a cup of tea. Please don’t wait for us to do it!”
“Put the kettle on... or open a bottle of something!”
7. Are kind and thoughtful
“I like it when my family and friends do something nice for me. It's the little things that make a big difference.”
“When friends and family continue to say hello to my daughter and make a fuss, even though they may not get any response.”
“When we attempt to go out as a family with friends, it means so much to me when a friend follows me around, so we can chat - as I follow my daughter, retrieve her from other people's tables, stop her stealing food, keep her safe etc.”
8. Are available (and tells us!)
“Step in at short notice to look after children when I need to go to A&E with my husband.”
"Reassure me regularly that I can call them if I need urgent help."
9. Offer practical support
“Drive me places for a change.”
“When my parents batch cook my daughter her special diet meals”
“Are proactive, noticing appointments, asking how they could help. Not waiting for me to ask for help."
10. Include the person we care for
“What I found hard was my eldest being invited to birthday parties and sleepovers but my youngest never received birthday party invites or offers to sleep over.”
“I would have loved my daughter to be asked for sleepovers with friends and family. Although I don't blame people for not asking. She is a lot of work and I guess it could feel overwhelming to look after her - but it would mean a lot.”
11 things carers like (or would like) their social workers to do
Being an unpaid carer can be emotionally and physically exhausting, and our social workers can play an important part in accessing respite and support services.
Social workers can make us feel heard, improve our own health outcomes, minimise our logistical challenges, reduce our exasperation and stress, and simply improve our day-to-day lives.
Who would it be helpful to share this with?
I like it when my social worker...
1. Is able to stay with us
“Stays for years meaning they get to know us, and build a relationship with our child. It also saves me repeating myself and rebuilding a relationship and trust, every time a new one starts.”
2. Has access to budget and resources
“Has the budget to fund the equipment and respite we need - when we need it - not when we’ve reached crisis point.”
“Is able to get us the support we need, without making us jump through hoops (go on extra courses etc) before the actual support becomes accessible."
3. Uses positive and clear language
“Uses positive well thought out language - rather than things like 'child in need' or 'foster care' for respite care - some of the terms really upset me. In fact, when we had a respite family, we were given the foster care paperwork to sign - they just scribbled bits out and I tore out the whole bit about input into schooling - they were only having our daughter for one night per month. It was really upsetting.”
“Visits my parents at home and really establishes a rapport with them, speaking quietly but clearly so they can hear but don't feel jangled or patronised, and asking questions which really draw out things they've never articulated before.”
4. Pays attention to detail
“I like it when my daughter’s paperwork does not include chunks of information relating to another child or labelling her with the wrong gender.”
“Social Worker put down my brother's name to enter into the care home instead of my Dad's - and that was an official doc!”
5. Creates less paperwork
“I like it when I’m not asked to complete repetitive paperwork.”
“Online forms are the dream, instead of having to print, fill in and sign, scan, upload and email back - or pop in the post. What a faff!”
6. Considers our needs as carers
“Is as interested in my needs as a carer as they are the person I care for (and I’m lucky, mine does).”
“Remembers who we are. Provides support to the carer - a listening ear even when the person I care for was in hospital and outside her remit. Asks ME really simple questions which just cut straight to the core of what I need to work out. Expresses sympathy. Offers to do some phoning around on our behalf. Comes back with the info and asks how things are going.”
7. Supports us to keep the support we have
“Allows me to step out of 'victim' status, without the risk of losing the support that we have. I’m allowed to actually have a good life.”
“Supports me to thrive, not stay stuck and risk losing support if things start going better. They're getting better because of the support.”
“Allows me to feel like I can say 'we're having a good day' or 'my daughter slept last night', without feeling that we might lose some support.”
8. Is known and available
“Is allocated, named and develops a relationship with us to see we are people, not simply a case note.”
“Listens and supports us! Haven't got one at present and the Community Care Worker signed us off last week despite me asking for help arranging a short respite break for me. I dealt with 3 different social workers last year.”
“We no longer have a designated social worker for adults with learning disabilities now that live at home with a parent. I have to deal with a duty social worker who cannot leave the office and seems clueless to my daughter’s needs. We are pretty much on our own! No one phones to check in, I leave messages and they don't get back to me!”
“Responds to my emails quickly... Remember in adult services at least in my area they only allocate a social worker for assessments or changes in care. Otherwise it's the duty team.”
9. Puts our needs first - not the system's
“It’s emotionally exhausting, resharing my story every time we get a new social worker. One social worker had her introduction meeting with me, I shared everything, then at the end of the meeting she apologised and told me she was leaving. The meeting was for the benefit of the social care team who ‘need’ to see us every six weeks - there was no benefit to me or my family.”
“Sees me face to face, as I am deaf.”
10. Is proactive and efficient
“Turns up as arranged.”
“Returns my phone calls.”
“Keeps me updated on referrals rather than waiting to be chased.”
“Returns your call, and listens to you. I have a very good social worker.”
11. Has a 'say it once' approach
“Doesn’t say, ‘I know you have told the history of your MS to your previous Social Workers, but it’s new to me so when were you first diagnosed’...”
“Doesn't make me repeat the same thing over and over again.”
Four simple ways our workplace can support unpaid carers
Being an unpaid carer can be emotionally and physically exhausting, but there are some simple things our colleagues, workplace and boss can do or be aware of, to improve things every day.
To make us feel heard, improve our own health outcomes, minimise our logistical challenges, support our mental health, make us feel included, support us to continue working, and simply improve our day.
Who would it be helpful to share this with?
I like it when my workplace, colleagues and boss…
1. Allow flexibility
“Is supportive of my flexible working around appointments. Including being able to work from home”
“Gives me time off for appointments.”
2. Trusts me
“Allows me to use my phone at work to check in with home.”
“Trusts me to manage my time around caring commitments.”
“Understands invisible disabilities.”
3. Shows interest and compassion
“Asks if I'm okay”
"Is kind when my mum's taken seriously ill."
4. Walk the walk and talk the talk
"It’s not just enough to talk about flexible working and compassion. The values need to be demonstrated throughout the organisation, at every level, through all interactions."
"Unpaid carers (and everyone) can be our best self, when we can bring our whole self."
Nine simple ways our hospitals can support unpaid carers
Being an unpaid carer can be emotionally and physically exhausting, but there are some simple things our hospitals can do to help.
I like it when my hospital...
1. Understands our the person we care for's needs
“Knows what a hospital passport is.”
“Has the 'safe space bed', hoist and sensory toys I requested for her operation.”
“Goes the extra mile in order to reduce my son's anxiety.”
“Minimises any waiting time and is aware of my son's challenging behaviour.”
“Has space for his wheelchair in the room.”
“Allows me to be with my son 24/7 to ensure his needs are being met, covid or no covid.”
2. Trusts and involves us in the care plan
“Tells me ‘I’ll follow your lead, you're the expert’ when mobilising mum.”
“Speaks to my son rather than me. And when he doesn't respond, takes what I am saying as the truth.”
“Understand that I know my son better than anyone.”
“Listens to me and sees me as an important part of my child's medical team, not just 'the mum'.”
3. Has accessible parking
“Has a designated pick-up and drop-off area that isn't shared with ambulances and white vans.”
“Has more blue badge parking.”
“Free parking for blue badges and enough spaces.”
4. Gives proactive and practical advice
“Tells me how long the appointment should be, so I can plan what we need (food, drinks, pads, entertainment).”
5. Has flexible appointment times
“Gives me the option of a telephone consultation when appropriate.”
“Gives me some flexibility over 'time of day' - to minimise impact on my daughters' routine (and therefore us).”
“Understands that 'waiting' is extremely difficult for my daughter.”
6. Has enough accessible toilets
“Has enough 'changing places’ toilets.”
7. Has a clear and streamlined discharge policy
“Has a streamlined discharge policy that enables the patient to be discharged during the day with everything they need. I am currently waiting for my mum to be discharged at the moment and my stress levels are through the roof. We are waiting for a review that should have been done 5 days ago, the doctors to do their rounds, medication and letters for the GP.”
“Has face to face contact by the discharge team. Face to face contact is essential for deaf people otherwise too many errors are made.”
8. Understand the impact on the carer
“I think it would be helpful if I felt that all staff understood that what may look like a 5 -10 minute consultation to them - could be 3 - 4 hours of travelling, time out of school, a day off work and a lot of planning for me. With my daughter out of routine, a special diet to cater for etc. It's actually quite exhausting to get to just a short appointment. So things like clinics running late can have a huge impact on us.”
9. Is contactable
“Answers the phone.”
What's next?
If helpful, please do share this with your local GP surgery or hospital. Perhaps your friends or social worker. Don't forget to also let us know what you would add to help us get carers' needs visible, here.
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