"Cancer, Diabetes, Depression and Unemployment"

About: Sussex Partnership NHS Foundation Trust / Working age mental health care (community)

(as the patient),

I decided to seek help for depression about a year ago following my mother's diagnosis with lung cancer. I've been diabetic for the best part of 24 years and have never been conscious of any other sort of existence.

I was eventually referred to The Bedale Centre in Bognor Regis, where after initial screening consultations I agreed (out of desperation) to undergo a course of Cognitive Behavioral Therapy. The course started in January and ended last month. In March I lost my job and in June my mother passed away; in short my experience of therapy has left me even more confused than when I started it, despite my best efforts. I feel like I've lost a lot of trust and respect for the team at The Bedale Centre, since I've given them a lot of information and received little feedback in return. Most of the therapy involved me filling out questionnaires and reading, which I did willingly - hoping that I might get help. What I got was more confusion and a deep-seated anger that I feel unable to dissipate, despite trying Mindfulness meditation at the request of my therapist.

During session my anxiety levels were exponentially increased and my diabetes control has suffered as a result of it. Reluctantly, I let my therapist attend one of my diabetes appointments, but that yielded little from my point of view.

I haven't received any feedback from my therapist's mentor since my last session, and I've grown increasingly anxious and angry. On top of this I believe that I may have Asperger's Syndrome - I've gone to my GP to be referred for a diagnosis but am once again waiting for The Bedale Centre to follow-up. Whilst I appreciate that there is always a time-lag, I feel unable to cope. I've worked exceptionally hard on my therapy and I am yet to feel any benefit from it...

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Responses

Response from Rachael Kenny, PALS and PPI Manager, Sussex Partnership NHS Foundation Trust

I am very sorry to hear that you are disappointed by our services and also for the loss of your mother and job. It has clearly been a very difficult year. If you would like to speak to a member of my team, the Patient Advice and Liaison service (PALS) they could talk with you in detail about steps that could be taken to sort out the problems you have been experiencing. The contact number for West Sussex is 01903 843185

Yours sincerely

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Update posted by Statistical Rarity (the patient)

Thanks for your response Rachael. On 13 September I tried to contact you and left a message. One of your colleagues did call back, but I am unable to recall her name. She offered to contact The Bedale Centre on my behalf and then proceeded to ask me some questions which should not have any bearing on the support I receive from the NHS; consequently I grew increasingly frustrated. Please don't misunderstand me. I appreciate that these questions (What is your sexuality? Which race are you? Etc.) are designed so that you can prove that all minorities are taken care of equally. However in doing so, you are intruding upon people's privacy, which in my case makes me feel threatened, and consequently less trusting.

In spite of this I have now received a copy of a letter, sent by The Bedale Centre to a GP (although not my GP). Unfortunately they have discharged me pending a one-off follow-up appointment which is on Wednesday. The letter itself was incoherent in places, quoted me out of context, and in some instances actually misquoted me entirely. In response, I have made a freedom of information request so that I can view my case notes, irrespective of the meeting on Wednesday - which I have consent to record.

It would appear that the Sussex Partnership is under-funded (I've downloaded their annual accounts), given the two-month wait that I've endured for my referral, which has in turn had an adverse effect on my state of mind and bG levels. As a result of this, I intend to inform my MP of my situation and ask whether there is any chance that further funding could be secured. I do not want to be interpreted as someone who is out for all they can get - I do appreciate that the Sussex Partnership operates within the same constraints as the NHS.

Response from Rachael Kenny, PALS and PPI Manager, Sussex Partnership NHS Foundation Trust

Thank you for your measured response. I can confirm that your Freedom of Information request has been passed through to our health records department as there is a different process for accessing personal as opposed to corporate records

I am sorry that you were angry about our equalities questions but see that you understand why we ask them – it is certainly not our intention to make you feel threatened. I can see from looking at the record of your contact with the PALS team that the situation did move forward but clearly not in a way that concluded satisfactorily from your perspective.

In circumstances like this my best advice is to make a formal complaint – or indeed to contact your MP as you have already decided to do. There is information about making a complaint on the trusts website.

Yours sincerely

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Update posted by Statistical Rarity (the patient)

Dear Rachel,

Thanks once again for responding.

I have already begun the complaints procedure, both within Sussex Partnership itself and to the British Psychological Society. On Tuesday evening, my meeting scheduled for Wednesday was cancelled. With regard to the meeting -

1) the consent to record the meeting was revoked

2) I have been told that the team felt that another of their number should be present

3) I have been told that I could bring someone I trusted to the meeting with me (i.e. a family member or member of PALS); and

4) They are now unable to give me an exact date - I'm to expect an appointment letter in the post in due course.

As you can probably imagine, I feel this is deeply unsatisfactory, and it leads me to further believe that I can't trust anyone at The Bedale Centre, and by extension, anyone related to The Sussex Partnership.

You have my contact details should you wish to telephone me personally. Please bear in mind that my anxiety levels are extremely high and I feel unable to relax until I know the direction that my future therapy (or lack thereof) is headed. I've waited over 6 weeks now - I feel I've been more than patient. On top of this I lost further weight since my therapy ended owing to the distress I felt.

Response from Rachael Kenny, PALS and PPI Manager, Sussex Partnership NHS Foundation Trust

Thank you for your message - I did not receive notification of it until Thursday 6th hence the apparent delay in relying. I am sorry that this situation remains so unsatisfactory for you. You and my PALS colleague have let me know that you are taking formal steps to resolve it - so please do not take my not getting in touch as a sign of lack of interest but rather a desire not to increase your anxiety in a situation where you are already pursuing all the options that I would advise. I hope that the meeting that you had on Friday moved things forward and please do not hesitate to continue to seek advice from Sussex Partnership PALS service if you would find it helpful

Yours sincerely

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