The long and winding road

Back in the spring a number of people started to suggest I might benefit from referral to a tertiary service. It would be wrong to assume that everyone knows what that means, so for those who need it, scroll down to the NHS bit. At first I was dubious; I just didn’t think I was ill enough to warrant being seen by a team of national specialists in affective disorders, and it seemed somehow disloyal to my consultant Dr X and all his efforts to stabilise me. But then my first spell with the Home Treatment Team brought me to bit of an impasse. HTT consultant Dr H did not agree with Dr X as to what should be done with me and he suggested that what he called “this lack of consensus” be addressed by a referral National Affective Disorders Service. This was in the first week in April. Over the following weeks I worked with a junior doctor on a timeline of my bipolar episodes and Dr HTT put together a referral letter, which he ran by me before faxing it over to the National Service at the end of April.

I finally received the appointment yesterday.

Seven months have elapsed since the decision to refer, and even now I would be nowhere near having an actual appointment were it not for Tom’s tenacity and the fact that I’m under Home Treatment. Ellie, one of my favourite nurses, looked into the holdup and found that although the tertiary service had approached my CCG for the funding they had since denied having any record of the referral. Meanwhile their email to the CCG had been sitting unacknowledged in somebody’s in-box since August. Tom spent a fair bit of the time he’d taken off to look after me phoning round to try and iron out the problems. The person at the CCG responsible for the decision to fund the appointment never seemed to be there; the National Service stuck to their story that they had no paperwork. Eventually Tom persuaded a somewhat reluctant GP Practice Manager to fax the referral paperwork over to the National Service again, and after the threat of formal complaint the CCG suddenly signed off on payment.

I keep asking myself how this is acceptable, and what would happen to a patient that didn’t have a qualified mental health professional at home who was so good on the phone. It was tiring even listening to Tom having to constantly reiterate that it was not our problem if paperwork had been lost, not our problem if no one at the CCG had read the email, not our problem if the person we needed was never available, and that action was needed now because I was suicidal.

The whole process has been exhausting. Since I last posted my mood has swung back and forth from hypomania to mild depression, never for more than a few days at a time (right now I’m somewhat high). I think the chasing then finally receiving the appointment has contributed to this instability. At one stage, getting the appointment itself was in the forefront of my mind. Now that’s here, my thoughts have naturally turned to what the outcome of the assessment might be, and I’m nervous. I can’t imagine that someone could turn up with my recent history – two major crises within 6 months despite being on high doses of the same two drugs I’ve taken for several years – without them suggesting a radically different treatment plan. And the thought of a big med change is scary, a voyage into the unknown.

I’ve been through lots of medication change in the past and not all of it has been pretty. Changing from one antidepressant from another has sometimes caused “mood switching” from depression to hypomania or, more dangerously, suicidal mixed mood. I was in bed for a week weathering the physical withdrawal – no, drug companies, not “discontinuation symptoms”, I worked with Class A drug users for years and I know withdrawal when I see it, thanks – from venlafaxine. An attempt to swap me from quetiapine to sodium valproate gave me an ultra-rare, 1:100,000 reaction of incessant psychedelic hallucinations and plunged me into crisis. And this most recent crisis occurred after just a 50mg drop in my quetiapine dose.

I don’t have much work on during December, and that’s probably best with so much uncertainty ahead. I’ve primed the HTT (Dr H and I seem to be getting much better this time around), explaining I don’t feel confident about handling a major change even with weekly appointments with Dr X, that at the very least I feel I would need daily appointments if not admission. They seem OK with that. While I wait I have been trying to co-ordinate my physical healthcare, ensuring I have paper copies of the outcome of the ECG and bloods I’ve had done at the hospital and a print out from the 24 hour blood pressure cuff I’ve just had done through my GP surgery. I have waited so long, and I don’t want there to be any hold ups because of physical issues. I also have a sheaf of seven questionnaires to complete and bring with me to the appointment.

This road has been such a long one, and I can just about see the end of it – but what lies beyond remains a source of anxiety.

The NHS bit

NHS services are divided into three levels. Primary care is delivered in the community and is usually thought of in terms of GPs but actually includes a wide range of healthcare professionals including practice and district nurses, community midwives and health visitors, healthcare assistants, and so on. In recent years, IAPT (Improving Access to Psychological Therapies) has attempted to provide greater specialist mental heath provision within the primary sector.

Conditions too serious or specialist to be dealt with in primary care are referred onward to secondary care. This sector includes acute Hospital Trusts who provide emergency care such as A&E, acute care (for example the wards on a general hospital) and hospital maternity care. Anyone who needs to be referred to Consultant or other specialist requires secondary care.

In terms of mental health care, secondary care means the Mental Health Trusts who provide what often used to be called Community Mental Health Teams (CMHTs), now often rebranded as Assessment/Recovery or Complex Needs Teams and more specialist community teams like Early Intervention in Psychosis (EIP) or Child and Adolescent Mental Health Services (CAMHS). Secondary care also includes day hospitals; community therapy such as that provided by clinical psychologists, occupational therapists or arts therapists; crisis services such as out of hours and Crisis Resolution or Home Treatment Teams; and inpatient beds.

Tertiary care is the most specialist level of NHS care and provides regional or national services for people whose condition is rare, intractable, especially complex or in some other way requires highly skilled input. For example some cancers are very uncommon, and are best dealt with by a specific expert at a regional centre, even if this means the patient has to travel further than if they were seen locally.

If someone is a healthcare professional (or in my case, the close relative of one) they are often offered the opportunity to be seen at a different Trust to protect their confidentiality. This is dealt with through a courtesy called a reciprocal agreement that Trusts will see another Trust’s employee on the assumption that if one of their staff needs care they can in turn refer them to the first Trust

So I live in Area A, but I’m seen in Area B under the reciprocal arrangement – the tertiary service is in Area C but has had to go back to the CCG for Area A for payment for their services.

Clinical Commissioning Groups (CCGs), composed mostly of GPs, hold the purse strings. They decide what services are needed locally and pay for them. If someone needs treatment outside of what is already provided by primary and secondary care, any tertiary referral needs to be agreed by the CCG if treatment is to go ahead.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
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7 Responses to The long and winding road

  1. AReader says:

    Glad to see another post from you and that your depression is over, albeit by going high.
    Completely agree with you re: difficulties getting referred through to specialist services and CCG payment for this. I battled through that a year ago. The end result was definately worth it for me. Thank you for raising awareness of how pants the system is and how nigh impossible it can be for the typical person with complex mental health issues to get the right diagnosis and treatment.

  2. Pingback: The lonely life of the outlaw | purplepersuasion

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  4. Ugh sounds exhausting. I hope the referral has come through by now. Great blog BTW.

  5. Pingback: Where there is no spring and no autumn: the world of rapid cycling | health

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