How to get help with surgery and hospital inpatient stays for Severe / Very Severe ME

This is a post collating what I learned, when trying to access surgery as someone with the symptoms of Severe / Very Severe ME. I hope it is concise and can help support others who find themselves in my situation or similar situations.

(Note: I had a thread on this forum where I shared all my difficulties accessing surgery, where members here offered advice and support. I wanted to make a detailed but easy to read summary of what I learned from that, but leaving out all the personal details. I will be asking for that surgery thread to be deleted due to the amount of very personal and very distressing details I shared, which I don’t totally feel comfortable about given the public nature of the forum. I only recently came to think about it, now that things are over. But I want the important information to remain so that others in my position can find help if they need it. I also wanted to say that I am very grateful to everyone who helped me when I was most in need. Thank you for being there for me, I will be forever grateful to you).

Severe ME / Very Severe ME

The most serious difficulties I encountered were related to getting a single room. Now that we are in a pandemic, and hospitals have been rearranged so that single rooms are given to covid patients and for infection control, it is even more difficult.

Many people with severe ME will struggle, and become extremely unwell, if on a ward, and would need a single room. This is now mentioned in the NICE guidelines too. In addition, even within their own room, PwME may struggle with the lights and noise from outside the room, may need lights to be switched off or dimmed inside their room, and want less people coming and going from the room. So there’s potentially quite a few things to sort out. What I learned is:

1. It is important to speak to the surgeon, and the anaesthetist who will be involved, directly about your concerns. You can phrase this as relating to your sensory processing difficulty / disability, because having “a sensory disability” is better known about in hospitals (perhaps due to better knowledge about autism and sensory processing). Once you’ve mentioned sensory difficulties, you can link this to ME, or other conditions you have which cause sensory problems (autism, migraines, etc).

Explain what you need (make a list beforehand), and why. As consultants, they will be able to liaise with other staff, to arrange for the things you need. It took me a long time to even get past this stage and find a consultant and hospital who would be willing to help me, and before that, I went through a very difficult time. (Please PM me if you would like to speak to me more about my experiences).

2. If you find that the doctor or hospitals involved are very resistant to your concerns, or are very dismissive, even when you mention the NICE guidelines, and things are dragging on for a few weeks or months, I would advise not to stay if possible. Don’t delay it too long. At the time, I stayed at the same hospitals for a long time, partly because I had tried other hospitals in the past and they hadn’t allowed any concessions for my disabilities, and partly as I couldn’t travel far, and as a result of waiting, my health deteriorated a lot. It’s important to put your health first.

You may be surprised as to how good your experience can be, once you find a really good and empathetic doctor / surgeon. As soon as I found a good surgeon and anaesthetist, in a different hospital, my experience changed completely.

3. I set up a meeting with the doctors involved and they also asked other staff from the hospital who would be involved in my stay, to attend the Skype meeting as well. I was to stay overnight as travelling on the day would be difficult, and would stay for a few nights afterwards too, so quite a lot needed to be arranged.

Things you may need to think about regarding inpatient stays:

A) In all hospitals, they do have single rooms which they usually reserve for those with infections or sensory disabilities. So ask about reserving one of them, and explain that your condition will deteriorate if you are in a noisy and bright environment such as a ward, and that it will be important for your recovery and health. Some resources which you can send them are: the NICE guidelines (section in Hospital care, and section on severe ME), the Dialogues for neglected illness project Film about hospital. If there are still problems, NHS hospitals also have private rooms, which can be used even when having NHS treatment, and you only have to pay for the cost of the room, so ask about those if that is feasible for you.

B) Some ideas for other things to speak to them about:

-blackout blinds (there are cheap ones on amazon you can buy, that can be attached to any window)
- bringing your own lamp, asking about keeping lights dim or off and using eye masks & dark glasses when the lights do need to be turned on
- bringing noise cancelling earphones or headphones, and over-ear defenders for your stay
- asking that people do not make a loud noise outside your room if at all possible
- asking to be on a quieter part of the ward.
- asking that those who come into your room are quiet and gentle as much as possible, and to minimise the amount of people coming in at a time. If a carer is allowed to stay with you, you could request that staff speak to your carer when you have too little energy.

- discuss food, any severe food intolerances you may have. You may like to bring some of your own food if you struggle a lot, they may be able to provide a mini fridge or else keep the items in the communal fridge for you
- if you need a commode, and can’t get to the bathroom (even if it’s an en-suite bathroom), ask for it.
-Discuss routines, eg hospitals wake people up at 5.45am for routine blood pressure checks! If this will be a problem, ask about timings at that particular hospital, as you may be able to request being measured last (eg around 8am), or even if a carer could take measurements if the hospital is happy with it.

Some of these things can be sorted when you are actually at hospital, but it’s also good to mention it beforehand.

C) You may need to discuss other things relating directly to your procedure eg pain relief, anaesthesia, drug sensitivities. Some PwME will find it helpful to have extra pain relief after surgery. I personally had IV ketamine and opioid pump following my surgery as I suffer with a lot of pain. I also had a mask which put me to sleep, before I was given anaesthesia, so that I was less stressed. The doctors may like to plan your route down to the surgery theatre, (you’ll probably be taken on the hospital bed), so that the route is less noisy. If you are sensitive to movement, you can explain that too so that those people taking you can be more gentle. There may be some medications that the anaesthetists may want to avoid, but it depends on your own personal health issues.

D) If you need someone else to stay with you, don’t be afraid to request it. It is difficult with covid, but hospitals do have a requirement to assist with disabilities. Explain why you need that person there, and that they know your disabilities well.

E) If you need to attend a planned hospital stay as an inpatient, but not necessarily for a surgery, most of the same things still apply. Remember that whatever is agreed on the day, hospital can still be very unpredictable with things likely to go wrong. If things do, make your concerns known as soon as you possibly can - usually first with the nurses on the ward, but also with the doctors who attend the ward rounds. It is important to know that the new NICE guidelines set out clearly what is needed for PwME during hospital, and the special considerations for Severe ME as well. So do not be afraid to use it.

I hope this helps others.

 

Addendum: intensive care

There may be a possibility that following surgery, you may be transferred to intensive care (Usually HDU, rather than ICU). This is sometimes a pre-planned admission.

There are single rooms available but it can be very difficult to be given one of those, given covid.

Most people in HDU are not heavily sedated, meaning they will be aware of light and noise. The plan for my surgery, was that if I did need intensive care, and needed HDU, and a room wasn’t available, I would be heavily sedated when I was there so that I would not be aware of the sensory environment around me. These sort of precautions can be discussed with doctors in advance - and it was easier to do once I found a surgeon and anaesthetist who were understanding. I was told that in some ways, ICU would be easier for me due to the heavy sedation / induced coma that is used there.

In the event, I did not need HDU but some days later did need ICU. I was later moved to a main ICU ward, where I was in an induced coma, and did not know what was going on around me until I started waking up (but this event is not directly related to ME).

 

Thank you so much @lunarainbows

 

i agree!!

 

I think this will be very relevant for Pw with severe and very severe ME. If you need to be admitted to hospital, you have a right under the Equality Act to have your regular carer / PA / family with you. Even under covid rules (although now it’s been changed from allowing 2 carers, to only allowing 1 carer). If you have complex care needs and/or you cannot cope in hospital on your own, then please tell the staff. I had no idea this was a right under the Equality Act. I’ve got it written on my autism Hospital passport that I need someone I know with me, other PwME who also need this, could tell staff verbally or have it written in a statement.

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