'Hospitals: a Carer's mantra. Why?'

Actionable insights and Ideas/tips.

Hello, Dear Ones! If you’re a new reader, ‘Welcome!’ I’m Victoria. You can read more about me and the Carer Mentor mission here: Who Started Carer Mentor and Why?’

It’s a busy week of medical appointments and supporting friends who’ve been recently diagnosed with cancer. As I said in my last letter on June 23rd, ‘When the going gets tough, you’re not alone.’

I’m compelled to write this because I’ve repeatedly had the same discussions about hospital stays and discharges.

Hands clasped together in support. An emblematic image of other hands encircling them in unity.

I’m highlighting information to answer questions from friends

Advice and expert insights from research, organisations and legislation, e.g. from Carers UK, Access Social Care (ACS), Age UK, Care Quality Commission (CQC), Patient Advice and Liaison Service (PALS), Department of Health and Social care, Care Act 2014. The Carers UK explanation of the Care Act

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What is my mantra?

Never assume. ‘Should’ is a swear word. Don’t wait—ask the question, even if people look irritated or try to dismiss you, or they say, ‘Don’t worry, it’ll all be fine.’ Don’t make a statement with an inflexion, ‘right’? Ask a who, what, when, where, why, or how question to avoid the ‘yes, yes, or uh huh.’

We need to champion the rights of our loved ones and our rights as caregivers. We can be firm, respectful and polite.

There is no wrong way of caring when advocating for yourself and your loved one's best interests, care and safety!

Why we need to be firm, avoid abdicating our rights or deferring responsibility:

Your local hospital, like mine, may have a CQC rating of ‘requires improvement.’ It falls below a ‘good’ standard. I’m not going to speculate. I can see and hear about the lack of nurses and doctors. I understand the breadth of geography and, thus, the number of patients the hospital has to cover and serve. I have friends who have had bad experiences.

I’ve never heard of a hospital having enough beds. In our area, no one except the most difficult/severe/at-risk patient gets the first or second single room. On the second day, you’d likely be relocated to the 6-person ward. Private and NHS resources are often the same, and there may be no choice in an ‘ambulance’ situation.

Every day, a department negotiates who is admitted to accommodate elective (planned) and emergency cases. This means hospital admissions must be weighed and prioritised. Hospital discharges are tested, and productivity is pushed.

Productivity may have been a great measure of the Industrial Revolution, but it is not something I associate with care, kindness, and empathy. Read any newspaper article or NHS report; you’ll find ‘productivity’ and many statistics.

Ask any nurse or doctor or look at the administration pile they must complete. Care is handcuffed by productivity paperwork (and I do mean paper!).

Hospital discharge is one of the system's weakest points. We hear about waiting lists or ‘bed-blocking,’ but what about the lack of social care resources, workforce, and in-community care support?

I’ve heard more examples of good communication and coordination between specialists, primary care physicians/GPs, and community care support in Scotland compared to England.

Hospital admission is worse for those suffering from a chronic condition, especially one that degenerates over time. It is a major event, a step change or leads to an extended period of trying to re-establish a sense of normality whilst watching for red-flag symptoms.

The NHS is only one part of the UK system. In an election year, don’t be distracted by one number. Look holistically. Social care and welfare are managed by local authorities and only partly overlap with NHS funding and resources.

It’s important to understand that acute care, or having an operation, is only one part of your journey as a patient. Who will care for you when you can’t bend over, get out of bed or do basic daily activities? Who will help you on the toilet?

I cannot walk you through the NHS and local council’s social care system's labyrinth. I’m not an expert ‘in the system.’ I turn to all the experts I’ve cited above to try to help us navigate it.

This is the simplest explanation: Health and Social Care Rights (England and Wales)

There is an increasing burden on unpaid carers, and the pressure can be overwhelming at hospital discharge.

Actionable Insights

1. Some basic Q&A

2. UK Carer’s experiences of Hospital discharge.

3. Carers UK Press Release: Hospital patients put at risk as family members left out of discharge process. (Sept. 2021)

4. Carers UK: Factsheets, checklists and guides

5. Carer’s Rights: What does the passing of the new Health and Care Act 2022 mean?

6. Key hospital discharge tips I’ve learnt myself or from others.

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1. Some basic Q&A:

1. What hospitals are near you/your loved ones? What is their Care Quality Commission rating?

   1. Prime yourself and your loved one. Resources, insights, ideas

   2. Each hospital has a directory of doctors—google them.

   3. Always get the names of the doctors you see, and try to understand who referred you.

2. Is there a ‘Centre of Excellence hospital nearby? Where is the nearest specialist cancer centre?

   1. Centres of Excellence usually implement innovative techniques, therapies and processes.

   2. Where are the closest cardiovascular and cancer centres of excellence located?

3. Does your general practice (GP) have an out-of-hours emergency number? Is there a specific one for vulnerable patients?

   1. You don’t know what you don’t know. We had a telephone number to call because Dad was highly vulnerable/palliative.

4. Where is your local pharmacy? Do you have a delivery service?

   1. The NHS app works well for us now. As their registered carer, I completed forms to manage my parents' health profile, including appointments, medications, etc.

   2. Being identified as the carer can give you access to the Carers Allowance, and your loved one could be entitled to the Attendance Allowance. These are not means-tested.

   3. Being able to order repeat prescriptions and have them delivered to our door is one less thing to venture out for or worry about.

2. UK Carer’s experiences of Hospital discharge.

It’s worth reading this report. Click on the image.

3. Carers UK Press Release: Hospital patients put at risk as family members left out of discharge process. (discharge pathways are stated below¹)

Press release Region: UK 07 September 2021

• Research by Carers UK shows more than half of family carers (56%) were left out of planning for their loved one to leave hospital

• The majority (61%) were not given enough information and advice to care safely

• Health and Care Bill before Parliament sees carers’ rights to support watered down

If you or a loved one has recently experienced a hospital discharge (in any country), I invite you to share your thoughts below

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4. Carers UK: Factsheets, checklists and guides

Coming out of hospital From the website:

There are four key points to bear in mind:

1. Each hospital will have its own discharge policy based on guidance from the government.

2. You can request a copy of the hospital’s discharge policy from the ward manager or from the Patient Advice and Liaison Service (PALS) department of the hospital.

3. Discharge planning starts as soon as the person you care for is admitted to hospital. It is important to let the hospital staff know as early as possible if you are a carer or thinking of taking on the role.

4. A discharge coordinator (or ward care coordinator) should be available to coordinate the planning process. They will act as a key person for you to contact to find out what the discharge plans are.

Leaving hospital checklist. A summary of what to consider:

1. Decide whether you can care for someone and know — it is your choice.

2. If you choose to look after someone after they leave hospital, you should² be consulted and kept informed by health and social care professionals.

3. Each hospital will have its own discharge policy.

4. You should feel comfortable that adequate support has been arranged before they leave hospital.

5. Find out what should happen when, and what to do if you feel let down by professional services.

5. Carer’s Rights: What does the passing of the new Health and Care Act 2022 mean?

Does it reinforce your rights?

Yes. From July 2022, the passing of the Act means that NHS hospital Trusts in England have a duty to ensure that unpaid carers are involved as soon as feasible when plans for the patient’s discharge are being made. This applies to all carers of adults needing care and support following hospital discharge. 

A note about consent

Note that your level of involvement is based on the patient's consent. However the Trust also has a direct duty to involve carers. The law says they must check you are willing and able to care. If you are not able to care, they might need to put in place different or additional arrangements.

Further support

It's good to know about advocacy services and further support to help you liaise with professionals over important matters such as the appointments and treatments of the person you look after. Carers UK Being Heard guide provides really useful insights to help you:

• communicate with professionals

• understand your rights

• deal with difficult emotions.

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6. The key hospital discharge tips I’ve picked up:

• Ward rounds are done in the mornings. People will be confirmed for discharge, but it could take a few hours.

• Leverage resources/organisation support: Macmillan nurse support, Maggies (if there is one there) and the Chaplain Team are all great resources to leverage in the hospital.

  • If your loved one is anxious, ask for the Chaplain Team (it doesn’t matter what religion or if you’re not religious) they can sit with them during the day/night—when you can’t visit.

• Thursday/Friday are prime days to be discharged. Weekends are terrible.

  • If you need any equipment at home, it may not be delivered until Monday.

  • Make sure you have all the pain and other medications you need. If you have a designated pharmacy, it may only be open until midday on Saturday.

  • If in doubt, refuse discharge. Don’t take risks at home, for example, a fall on the stairs.

• Be clear about the care package, carer support, and how you will be safe at home. Ensure you have the name and mobile phone number of someone you can call with any issues, e.g. the occupational therapist.

  • it’s easy to use a walking frame on a plastic floor to drag your feet without manoeuvring around obstacles. It’ll be more difficult at home in a cramped, carpeted or uneven floor space.

• If your loved one has had an operation or any blood-related issue, check their haemoglobin level is in range. Anaemia or drops in blood pressure can lead to a fall. Ask if an iron infusion is needed.

• Check that you know what new medications have been prescribed and why and that you have a prescription to fill. For example, has a course of antibiotics been started and needs completion? Make sure your GP knows.

• Make sure you know the cause and what was done in the hospital—sometimes, you will get a discharge letter in hand, and sometimes, not! Write it down and inform your GP. We had inaccurate letters for Dad.

• Ask what negative symptom changes you need to look out for and what, if anything, you can do to either prevent or treat any short-term issues

  • Understand how to identify symptoms of sepsis and Urinary Tract Infections

• Our ‘back home’ routine: Tea, cake/biscuits/sandwich for energy, shower, and sleep. It’s unlikely that your loved one has had any proper sleep when their blood pressure or other measures have been taken regularly in the hospital.

• Recruit support from friends who can get a prescription/shopping/cook.

• Remember to take COVID precautions; it is still present in the community, and the worst cases are treated in hospitals.

• Bottom line: Try to preempt acute emergencies. Monitor symptoms and work with GPs. This is not just about your loved one; caregivers need to stay healthy, too! (Dental, Health Screenings, Cardio…preempt a crisis!)

I hope this offers readers in the US ideas and questions despite being UK-focused.

In the next article, I’ll share more about Care at home and Access to Social Care.

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P.S. Even in the nightmare years when we were caring for my Dad, some doctors and nurses went above and beyond to support us. I want to underscore that many healthcare professionals are trying to compensate for the care-gaps and issues.

Department of Health and Social Care:

1. Annex B: discharge pathways

Pathway 0

Simple discharge home (to usual place of residence or temporary accommodation) co-ordinated by the ward without involvement of the care transfer hub, with:

• no new or additional health and/or social care and support

• self-management with signposting to services in the community

• voluntary sector support

• re-start of pre-existing home care package at the same level that remained active and on pause during the person’s hospital stay

• returning to original care home placement with care at the same level as prior to the person’s hospital stay^{[footnote 7]}

Pathway 1

Discharge home (to usual place of residence or temporary accommodation) with health and/or social care and support co-ordinated by the care transfer hub, including:

• home-based intermediate care on a time-limited, short-term basis for rehabilitation, reablement and recovery at home

• re-start of home care package at the same level as a pre-existing package that lapsed

• returning to original care home placement with time-limited, short-term intermediate care

• long-term care and support at home following a period of intermediate care in the community

Pathway 2

Discharge co-ordinated through the care transfer hub to a community bedded setting with dedicated health and/or social care and support, including bed-based intermediate care on a time-limited, short-term basis for rehabilitation, reablement and recovery in a community bedded setting (bed in care home, community hospital or other bed-based rehabilitation facility).

Pathway 3

In rare circumstances, for those with the highest level of complex needs, discharge to a care home placement co-ordinated through the care transfer hub, including:

• care home placement for assessment of long-term or ongoing needs and facilitation of patient choice in relation to the permanent placement

• long-term care and support in a care home following a period of intermediate care in the community

2. Remember, often there is a gap between the expectations of ‘should’ happen and what actually is said, done and acted upon. THIS is why we need to ask and act proactively.