Share your views to help influence new strategies on primary & community care

For the first time that we know of, Jeremy Hunt, Secretary of State for Health, wants to hear from people with lived experience to inform a new strategy he’s producing on primary (GP's) & community care. It's a great opportunity to tell our stories, influence Government thinking & constructively challenge thinking with regard to what is politically being discussed & the reality of what is happening on the ground. I've been invited to take part in the discussion this Weds & if you have/have had PP I really value your thoughts on the questions below.

The discussion will be based around these six questions:

1.What are the best parts of the care you receive?

2.What are the parts which aren’t working as well?

3.What three things would improve your care?

4.From your experience, what are the greatest barriers or difficulties in receiving the care and support that is specific to your needs?

5.Have you been involved in planning your care which is specific to your needs and did you feel a difference in how you received care after that?

6.What would you like to see improved?

If you have any comments, thoughts or experiences you'd like me to highlight, please share them here.

Our PP voices will be heard! Many thanks all.

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  • Hi Andrea, just seen this post. I hope I am not too late in responding. it's so good that you will be at a consultation. I don't know if I can answer the questions exactly as I am not really receiving that much support anymore because I am more or less recovered, but I would say that I think I received the best support I could have done and am truly thankful for that and it made a huge difference - I was fully recovered after a year and a half, and was really acutely unwell with the psychosis, and also had bad depression. I also know that not everyone receives the support I received. So I guess I would want to say: MBU's are ESSENTIAL for the best recovery, in my experience. Can there be more MBU's for mothers to access, it seems the main reason people don't go to MBU's is that there isn't one near them, or the health authority isn't willing to fund the place if they don't think the person is unwell enough? in the end I am sure it would save money because recovery would be quicker. MBU helped me to recover, was a safe place, helped me to bond with my baby (essential to my recovery), it was a completely holistic approach. When I came out of the MBU I was supported by the Early Intervention Team. The support again was amazing - It was important that I could contact them whenever I needed and they could meet me quickly - including the psychologist who did CBT with me. Again a holistic approach of psychiatrist (reviewing medication), CBT, and just general support from the mental health worker was essential. Things like coming to a return to work meeting with my employer etc, or having a couple of meetings with me a my partner. My partner was also offered support, though he didn't take it up. This kind of holistic approach, thinking of all aspects of your life and trying to support you in all of them, was essential.

    Also health authorities willing to fund the best medication, even if it is more expensive. I was on an expensive anti depressant (I think the pharmacist said one box was over £100!!) but it worked. I will be forever thankful to the NHS and the support I received, I really couldn't fault any of it.

    Thanks Andrea and hope the meeting goes well

    Ellie

  • Hi Andrea, so glad you going to the meeting!!! It's a great chance to put it straight to him. I'm sorry I never emailed my answers to the questions, but here are my shortened version answers, all the way from my wee holiday on Arran!

    1. Access to specialist perinatal psychiatrist and her team at the MBU. Expert care, focused on recovery from psychosis and confidence building in parenting.

    2. GP and HV referral to the above is patchy. MH teams are not as joined up and "obvious" as they should be. Are they community based? Hospital? Mix of the 2?

    3. Guarantee that GP (and A&E!) knew who to refer me to in a crisis.

    MBU that is geographically closer to home. Only 12 miles but in central London this could easily take over an hour.

    Access to wider range of psychological therapies (eg counselling).

    4. I honestly belief improved training and support for midwives, HVs and GPs would go a long long way to improving perinatal MH care.

    5. Sort of - I was involved in the drafting of my crisis care plan when I was being discharged, so me and my family knew who to contact and when in an emergency.

    6. More funding for MH. A killer statistic is that, amongst the under 65s, MH makes up OVER HaLF of the total disease burden. Yet it receives only a small proportion of the total health budget. This needs to change if we are ever going to have real "parity of esteem" between physical and mental health.

  • Yes, yes & yes!! Thanks so much for your comments Sunnyandwild & KatG. No they're not too late at all, the meeting is this afternoon but please everyone keep your comments coming even afterwards. They're really important & we'd like to hear about the care you received, either good or bad. Lets keep this thread growing!

  • Hi Andrea,

    Hope i'm not too late, I only received your email this morning.

    My points would be.

    1. Best parts having a perinatal pshcyiarist. I had a different psychiartist when I was discharged from hospital for 3 months. My memories are of her saying I don't know what to make of you - you are not getting any better or worse. Also having regular contact to a Social worker was great. It was good to develop a relationship with her and it felt that I had friend calling out to visit when things were very difficult.

    2. I'm not the biggest fan of Home treatment. I understand their role but I felt there were too manby individuals involved in my care and each time a I met a new member of the team I thought the didn't know my history. I think I had about 12 different home treatment individuals visiting me. In my care plan this time I have home treatment involved but I have asked that they try to keep the number of individuals visitng me to be about 4 or 5.

    3. Having access to MBU. I live in Northern Ireland and we dont have a MBU. I was in a general pshc hospital, I remember when I came round in hospital and meeting other patients and thinking I had nothing in common with them.

    Having more access to material about PP. You should be given an information pack with details about the illness, partners and families experience, recovery and what support services are available. Even include some case studies. One of the hardest things I had to deal with was that I had never heard of this illness, I had no history of mental health problems and I really had no one to turn to.

    I really wish when I was in hospital that someone would have taken time to explain this illness to me and what recovery was going to be like. For the first year and a half after I was ill I was scared all the time that it was going to happen to me again.

    4.Greatest barriers was not knowing what support was available. My pshchiarist suggested a psycholosit (cant spell) (I think my son was about 2) he was a great help and propably something I could have done with earlier but I didn't know about psychologists until it was suggested to me. Also through this website I have heard of Home start and I made a self referral and they are going visit me this time round when baby number two arrives (due in 2 weeks). Again this was never mentioned to me first time round.

    5. I am involved in my care this time round. So far I think my care has been great I have access to my perinatal psychiarist, CPN and social worker. Thankfully I have kept well during this pregnancy and we have agreed that they would only visit me if I felt I needed it. The only negative issue I have regarding my care plan was when it was drawn up my GP or health visitor didn't attend. They are the two people who know the least about my history. We have changed GP since the last time (because of the way he dealt with me after this illness) and I have yet to meet the HV. I feel strongly that they are the two people who know the least about this illness.

    6. I would like to see a greater awareness of this illness so that I could stop saying I had a severe mental health problem when people ask me what happened. I would also like to meet more people who have had PP. I've met two in 5 years. I also think partners could be offered more help/support. Also definitely more funding for mental health and in particular PP and more access to complimentary/holistic therapies.

    Sorry this is so long I kinda went on a bit. Good luck with the meeting. Now i'm off to my to my cranioscaral care which hopefully will help me this time round, just unfortunate its something i'm paying £40 an hour for!!! But if it stops me getting PP again it will be money well spent.

    Thanks again

    Maria

  • I think I am probably too late as I only received the e - mail this morning. Anyway just in case I am in time here are my thoughts :-

    As others have said MBU essential. When I had my first child and became ill (17year ago) I don't think they were much heard of. I know that would have speeded my recovery and eased my pain when we were separated as my son was 9months old when I developed PPS so we already had a strong bond and he was the only thing I was left holding onto on this earth. A MBU would have allowed recovery without being separated. For my second pregancy (10 years ago) my phsychiatrist looked into the option on a MBU should I require it and although there one a MBU in the area it wasn't staffed! Simply a tick box excercise! By my third pregnacy (7year ago) I don't know if MBUs were available. It was never mentioned and although being ill I managed to avoid hospital after my 2nd and 3rd pregancies with the help of medication, my CPN and phsychiatrist.

    I was involved in my Crisis Care Plan when I was pregnant the second time around and it did help me to know we had a clear plan of action.

    One point during my illness that my family made (i.e. my parents) is that there was no support for them and a lot of the time they felt in the dark. If this could be addressed I'm sure it would benefit the patient as well. As when you are discharged your family is your main support network and have to help get you through each day

  • Hi Andrea, I fear I am too late to contribute, however, it's really encouraging to hear about this and look forward to hearing further.

  • Hi really interested in hearing everyone's responses, I think I agree with all the comments, especially the lack of info I was given about pp, even mbu did n't say much. An information pack would be a great idea...I know app has loads of info would be great to get a commitment from mh teams, government, mbu that they would distribute when appropriate.

  • Hi everyone,

    Many thanks for all your comments, they're all excellent & all help to give a clearer picture of exactly what is needed. Even though the meeting has gone, please do keep adding your thoughts here.

    Your points all mirrored my own & I did manage to read them on the train before the meeting & include them in the discussion. It went very well indeed & I managed to talk about everything that was needed & more! (& it was a very long list!). There'll be a news post about it on the APP website with more details soon.

    Thanks for your help & keep your thoughts coming! :-)

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