"CFS treatment in Edinburgh at Astley Ainsley"

About: Astley Ainslie Hospital

(as the patient),

I was referred to the Astley Ainsley Hospital (AAH) CFS department by my GP when I moved to Edinburgh. It was - by far - the very worst experience I have ever had with the NHS.

I have no doubt that the people who give the treatment are well-meaning and probably competent for the most part (though a mistake was made in my own treatment, which has set me back about 4 months by my estimates).

The issues lie mainly with the criteria for treatment, how they interact with patients, and their remaining firmly locked (unmovably) in 1970s century technology.

CFS is a serious chronic illness which can be severely debilitating. People who need treatment the most will struggle to get to the clinic in person; yet AAH refuse outright to treat people who cannot attend in person. I managed - just - to get there. 

But the biggest issue, by far, is the cavalier way in which I was treated by the administration. The department do not seem to have any real way for patients to get in contact. They do not accept emails, or answer the telephone. To contact the department, you have to phone a number and leave a message on an answerphone. They may or may not get back to you. In my experience, a minimum or two messages is usually required before somebody calls you back.

I decided to come to Spain for the summer, to convalesce. I am writing this from Spain, and my symptoms have massively reduced in just the three days I have been here. But I was told by AAH that they would discharge me, on the grounds that I would be absent for 6 weeks and unable to attend the clinic in person. I am, apparently, welcome to apply to rejoin the start of the waiting list (minimum wait of 12 weeks) when I return to Edinburgh, and start all over again.

They also explained that they cannot possibly do anything for me by phone while I am in Spain. Other NHS CFS departments can do this (and have done with me). But AAH seemed really very confused by the idea. My therapist did try, and did seek permission from their boss, but there seemed to be a problem of some sort. I'm not sure what. I offered to call them (so they didn't pay), but apparently they cannot receive phone calls. They don't know WHY this is so, just that it's "in the rules". So they "have to" discharge me if I go away for the summer in an attempt to recover my health. Since it can take up to a week for me to recover from such a journey, it makes no sense for me to shuttle back and forth to Edinburgh. I'd be losing all my gains and in an almost constant state of travel (1 week to recover, stay 4, journey back, 1 week to recover, etc etc). But I was so desperate for treatment that my partner and I agreed that this is what I would have to do; despite the huge expense and damage to my progress.

So I phoned the department on a Wednesday and left a message, begging them not to discharge me but to call me back and I'd cut my holiday short. Since it was urgent, I had planned ahead and decided to leave a message every day until I got a reply (I knew the ropes by then). I left a second, identical, message on the Thursday. I was quite upset. Friday's message saw me in tears as I left it. Monday's message I was quite downhearted. Tuesday's message I was a little cross. The second Wednesday's message I was again in tears.

I was called back roughly one week after I left my first urgent message. The person who called me back explained that she only works Wednesdays, Thursday, and Fridays. The person collecting the messages had only emailed her on the Monday, so she couldn't call me back until the Wednesday.

I asked why the person who listens to the messages had not simply called me back and told me that they had got the message and that I would receive a call on the Wednesday, to save me all the worry and heartache? Especially when they could literally hear me crying on the phone.

I was told that this wasn't really their job. The person who finally called me back (who was also treating me) could literally see nothing wrong with how the admin department had handled my daily desperate messages (by ignoring them).

Just absorb that for a moment. Somebody listened to increasingly desperate answerphone messages from a patient being reduced to tears over a period of a week, and decided, almost every single day, NOT to do anything about it. This is what that looks like, in a schedule:

Wednesday: receive message; do nothing (although correct person is in).

Thursday: receive message; do nothing (although correct person is in).

Friday: receive message; do nothing (although correct person is in).

Monday: receive message; send an email to somebody they know won't be in until Wednesday.

Tuesday: receive message; do nothing

Wednesday: receive message; do nothing (in the afternoon, the correct person gets email sent on Monday and finally calls back)

 It is, by far, the least professional department I have ever had the misfortune to have to deal with: in the NHS or anywhere else.

A few days after all this, I was told by another patient that they have gone to Australia for the same reason that I am in Spain. They had already been away for 9 weeks, but were NOT discharged; there was no problem. So the rule is either untrue or only enforced for some patients but not others. But again, that's fairly typical of the chaotic nature of the department. Sadly, I really can't say that I'm surprised by it.

Oh: they also cannot accept emails or any other electronic documentation. So every week one has to remember to print out ones logs, if one has done the sensible thing and kept them online. If one forgets, then of course the next session is nowhere near as productive. But apparently, making sure you have a sheet of A4 and several different coloured pens about ones person at all times is the most efficient way to produce the required logs. And since sheets of A4 are impossible to lose, blow away, or spill things on, maybe we will see Google move their business model to paper as well, following this innovative model?

They refused outright to read the reports I had from a private company because I did not have them printed out, but only on a USB stick and in my email. They also did not read the notes from the previous NHS department (despite having been sent them, directly, by the previous therapist) - and it was this lack of reading of the previous notes which led to them (mistakenly) telling me that I was exercising too much and to cut back immediately. By the time the mistake was rectified (about 12-15 weeks later) I had lost the fitness which I had spent 6 months slowly building up, and I was back in pain.

I can compare the Astley Ainsley CFS dept only to a private company and (more fairly) to the Maudsley CFS department in London, who treated me before I moved to Edinburgh. It's like comparing night to day. Maudsley were were professional, caring, accommodating, able to treat me remotely, able to receive - and even read - notes from other NHS departments and private companies, able to email me notes and documents which I needed to read.

After my experience with the week of phone messages, my partner and I discussed the matter again. We do not trust the Astley Ainsley. An outfit who have already made one mistake in my treatment and who exhibit such grossly unprofessional behaviour are, in my view, not the sort of people I trust with my health. I discharged myself, and I will be getting treatment privately. They will be treating me while I am in Spain, because they have mastered this newfangled wizardry which is known mysteriously as the "telephone".

I will be remaining in Spain for the whole summer, and when I return I will continue to be treated by the private company. Go on a 12-18 week waiting list at Astley Ainsley to be treated like THAT? No way. I would not return there if they offered to pay me.

I don't really have the cash to go private: but my partner and I don't think I can afford NOT to, given that AAH is the only alternative.

 In my opinion the outside of the department's building is entirely depressing. A wooden building, with paint clearly pealing away from most walls. The entrance to the department is by some large rubbish bins. Sadly I have found the state of the building is, really, a very accurate metaphor for what awaits within.

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Response from Jeannette Morrison, Head of Patient Experience, NHS Lothian

Dear ThisIsMyScreenName

I am so sorry to read about your experiences with the CFS service at Astley Ainslie, it sounds as though you have had a very difficutlt time. I have passed your feedback on the senior nurse who was also very sorry to read what has happened.

I was pleased to read that you are feeling better and wondered if you would like to come and meet with the team when you get back from Spain to see how they can help you and learn from your experiences.

If you would like to take up this offer please can you contact the Patient Experience Team either by email (feedback@nhslothian.scot.nhs.uk) or by telephone (0131 536 3370) and I hope that we can help.

Kind regards


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Update posted by ThisIsMyScreenName (the patient)

Thank you for your response and for your concern. I will drop you an email, with details of an organisation who know of similar stories to mine in the Lothian area. I do hope that some sort of change is effected; I know for certain that I am not the only person to have been severely disappointed with the admin side of things.