"I feel failed by my doctors and cannot get the support I need "

About: Lincoln County Hospital / Maternity NHS South West Lincolnshire CCG

(as the patient),

Since the age of ten I have suffered with depression, bullying at school and family problems contributed towards why I started to suffer with this. Growing up I never had any confidence and found life difficult. I left home in the hope that things would get better, which they did. However work life became difficult too. I then began the battle with anorexia 20 years ago and I was then given tablets that could help with both my anorexia and depression.

I started seeing a doctor at De Montfort University in Lincolnshire who was very good and helpful. I also saw a counsellor and my doctor and my councillor were very proactive in discussing my health and the steps with each other which they thought would benefit (this doesn’t happen anymore). This to me was helpful in my improvement as I felt consistency was key, even though I was being diagnosed with various illnesses.

I was then referred to a Beaconsfield House in Nottinghamshire, here the doctor and I would discuss what course of action to take and would come to an agreement. Then when I would go and see my GP he would say that my other doctor has changed their mind. This then became a very back and forth process as both doctors wanted me on CBT which I wasn’t prepared to do. I can’t believe how the service you receive from the NHS can change so dramatically within different postal code areas.

Again I have been to see my doctor today and found myself battling yet again as the medication I have is not working and all they want to do is put me on CBT. I’ve tried to ask for alternative treatments as in the past I have acupuncture which I paid for myself and this did help; however the doctors are just unwilling to entertain such ideas.

I am now at a point where I have given up on getting better; my illness is causing me to have problems within my part time work. I struggle to get out of bed; I can no longer function properly. The only way forward is to go privately which will then impact my family financially - all because the health system is failing me and I cannot get the support I need.

Not only do I have to live with my illness, I have to live with my child's too whom has high functioning autism. In the past a paediatrician has told me that this could be hereditary and I’m wondering now if my illness stems from something deeper than depression. Perhaps my illness is related in some way, when looking into this I found I suffer symptoms similar to that Asperger’s. However yet again I have not been listened to, which is causing myself and family to become ever more frustrated with the system.

I felt let down by Lincolnshire Hospital when I was pregnant, as I felt I had not received sufficient postnatal checks and when I did get checked, the staff were very snappy. I feel failed by the system and most of the care I have received has not been beneficial to my health. I am especially not happy with my current GP. I am made to feel invalidated and that what I am saying is stupid, I think this is partly due to my mental issues.

The main issue I am currently dealing with is that I am struggling to get the help I need. I feel my doctors are not helping to see progress and this is making things worse. Therefore I have actively tried to seek other options such as social groups in my community.

I have very much struggled in the past within social surroundings due to my illness and this has improved slightly as I have got older. However when I attended one of these social groups I found myself sat alone and feeling even more lonely, and depressed with the situation, nobody approached me and I don’t have the confidence to approach anybody else. For me living where I am now is making me worse I am struggling to see how much longer I can go on for, and there’s no support for me here.

If anything could be improved for me personally it would be the support of my doctors and help within the community, for example somebody who can understand my illness and come along as support for me to community groups. This would help build my confidence and in turn help me to meet people. All this would lead to me becoming happier and find life easier within the area live.

Another improvement I would like to see is that doctors stop treating patients in a sense of ‘one size fits all’. Budgets come from the top down and every patient has different needs, the budget needs to be used for more practical needs of patients.

All of this is causing my galactorrhea to worsen and I feel without improvement to my illness I will not see further improvement with the galactorrhea. I just need some help from somebody to improve.

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Responses

Response from Jennie Negus, Deputy Director of Patient Services, United Lincolnshire Hospitals NHS Trust

picture of Jennie Negus

Dear May13 - your story was so sad to read but also important for us to hear; thank you for taking the time to tell us. Clearly there are a number of different people and agencies involved in your care (which I accept causes its own added problems) and I suspect you will therefore receive a number of replies to your story. I can obviously only respond on behalf of United Lincolnshire Hospitals who provided your maternity care - but each piece of the jigsaw is equally important to provide the right picture. I discussed your story with our Head of Midwifery and she has asked me to firstly give her sincere apologies; your experience of snappy staff is simply not good enough and she is sorry that you experienced this. She is unable to respond though to your concerns about postnatal care without some further details and has asked that you perhaps would like to contact her directly at hazel.harrison@ulh.nhs.uk and she would be happy to look into this for you? Thank you again for telling us about your experience; I know you won't have done so lightly and I hope you manage to get things back onto an even keel for you.

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