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No accomodations made to help me

Posted By Untreatable Apparently

"No accomodations made to help me"

About: Musgrove Park Hospital (Taunton) Musgrove Park Hospital / Gynaecology

(as the patient),

I feel like I have been messed around by NHS and NHS trained staff for a year, and I may have finally lost anything faintly resembling a sense of humour. I have been told that I probably have ASD (by my psychiatrist, following long surveys), and I can be a bit of a challenge to deal with. But despite describing the sheer terror that hospitals fill me with, no-one has actually tried to find out what they can do to help me. It feels like all they have done is tell me it's my fault that I cannot fall in line with their way of doing things, and made me feel bad for asking questions.

Their Patient Advice and Liason Service are apparently experiencing "capacity issues" (their words, not mine). I rang up to chase up a couple of questions. I was told (12 days after emailing them) that if I want to find out why the gynaecology service never called me back when they were supposed to, I would have to go through an external advocacy organisation. 

When you're depressed and bleeding to death, that is not very helpful.

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Responses

Response from Karen Holden, Associate Director of Patient Centred Care, Patient Experience, Musgrove Park Hospital 5 years ago
We are preparing to make a change
Karen Holden
Associate Director of Patient Centred Care, Patient Experience,
Musgrove Park Hospital

Submitted on 10/07/2018 at 17:37
Published on Care Opinion at 17:44

picture of Karen Holden

As the lead for the PALS team at Musgrove Park Hospital I was sorry to read your post. I will meet with my team in the morning and respond to you as soon as possible.

kind regards

Karen

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Response from Karen Holden, Associate Director of Patient Centred Care, Patient Experience, Musgrove Park Hospital 5 years ago
Karen Holden
Associate Director of Patient Centred Care, Patient Experience,
Musgrove Park Hospital

Submitted on 12/07/2018 at 15:02
Published on Care Opinion at 16:42

picture of Karen Holden

Hello again, I met with Sonia Cawte, PALS and complaints officer who has been supporting you with addressing the issues you have raised. Sonia was saddened to read your post and apologises that despite her efforts you are left feeling dejected.

Sonia had suggested you access our Somerset SWAN Advocacy service as she thought this may be helpful for you and was meant as a positive suggestion to move your concerns forward. Many of our patients use this service and find it to be very useful and supportive, we hope you would too.

In regard to your gynecology situation, without going into details on this public site, I understand there is an offer of an appointment for you and this can be scheduled if you would like to proceed. Sonia has repeated her offer to accompany you to an appointment if this would be of help.

If you have any urgent and immediate medical concerns, please see your GP.

I hope this helps reassure you that we do want to try and meet your needs.

Kind regards

Karen

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Update posted by Untreatable Apparently (the patient)

First of all, I would like to point out that this site has mangled my "story summary". I did not write "hope" as one of the options. I wouldn't be that stupid, and after reading the reply above, I have officially lost all hope.

I started to type out a long response, and thought "what the Hell"? Why bother. I recently sent questions to PALS and complaints, who told me they needed more information. They then told me my email was too long. I cannot win. You repeat their offer to accompany me to the appointment. They *know* this is not the problem. I don't think directing me to SWAN was meant to be helpful or meant to be a positive step, I felt like they didn't want to deal with me. If various people had done their jobs properly - including your PALS team - I would not be in this situation now, but let's not worry about any of that, huh?

There is no point trying to describe how I feel, because no-one listens. No-one has asked what would help me, or to tried to make any accomodations that might allow me to be treated. No-one cares, and no-one will help.

Anyway, my Hb is back down in the 50's, and I'm still bleeding. I effectively have one option left.

Thank you.

Response from Karen Holden, Associate Director of Patient Centred Care, Patient Experience, Musgrove Park Hospital 5 years ago
Karen Holden
Associate Director of Patient Centred Care, Patient Experience,
Musgrove Park Hospital

Submitted on 13/07/2018 at 10:59
Published on Care Opinion at 11:15

picture of Karen Holden

I am sorry that my response was unhelpful and I am glad you have also made contact with me directly to which I have now responded. I hope we can have a conversation and agree the best way forward together.

We do care and we do want to help; I am sure we can find options.

I look forward to talking with you.

Karen

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Update posted by Untreatable Apparently (the patient)

It's now a couple of months since I posted the review here. I met with the staff member who replied to my review (Care Opinion seem rather funny when you actually use a staff member's name).

The positives:

- she really listened to me, and asked me what I thought might help get me to the stage where I could be treated

- she (and another colleague) pulled some strings

- they worked out a care plan for me, which I think was a really helpful and positive step

- they managed to coax me back in to the hospital without me losing it

- the staff were lovely (Hestercombe Ward FTW)

- the main underlying problem has been sorted, and I'm getting my strength back.

The negatives:

- my mind is still boggling that, after a year of dealing with various doctors etc, when something is very clearly wrong, I only received the help I needed after posting a lousy review on a public-facing forum

- despite dealing with countless doctors, nurses and other support staff, the lady I met with after posting the initial review was the first person to actually ask what they might be able to do, as opposed to berating or penalising me for being too scared to be able to fall in line with what the hospital wanted.

So, a big round of applause to the two staff members who really put themselves out to help me.

A slow handclap to those who couldn't be bothered. Including - but not limited to - the member of staff who listened to me explain my fears for five or ten minutes, but then summarised them on my medical record as "for some inexplicable reason".

Response from Karen Holden, Associate Director of Patient Centred Care, Patient Experience, Musgrove Park Hospital 5 years ago
We have made a change
Karen Holden
Associate Director of Patient Centred Care, Patient Experience,
Musgrove Park Hospital

Submitted on 01/10/2018 at 11:00
Published on Care Opinion at 16:49

picture of Karen Holden

Thank you so much for posting an update and I am pleased we were able to work with you to facilitate your treatment taking place and get you on the road to recovery.

I am looking forward to working with you now on sharing your story with colleagues to further our learning and I appreciate the time you are offering us.

I will make sure that we build on the positives you describe. Thank you again for sharing.

Kind regards

Karen

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