Jill and the NHS Funding Maze

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Within the next month or so, a panel of three North East Lincolnshire GPs will decide whether one of my closest friends will receive care, which her hospital doctors have recommended, at a specialist centre. Till that decision is made, she will remain in the stroke unit at her local hospital.

This post is a slight departure from my usual subject as although it concerns health, it’s really about human health, without an obvious link to animal health or wildlife. Still, you might forgive me if I tell you that the human whose health is under discusssion is a dedicated veterinary nurse.

Jill’s Story

First, let’s be clear. My friend (let’s call her “Jill”) did not have a stroke. She suffered a brain haemorrhage in March this year. She was driving home from her job as a nurse manager at a busy charity veterinary hospital when it happened, very suddenly and with no warning. She managed to stop the car at the side of the road, where she was found by another friend and then transferred to hospital.

After considerable delay, while she was assessed and then waited for ambulance transfer, she was transferred to a second hospital, where she received life-saving brain surgery. Jill’s husband is devoted to her, and was shocked by the suddenness of her injury, the cause of which is unknown. However, he, I, and all her other friends were beyond delighted when Jill began to make a slow but steady recovery. We are all incredibly grateful to the amazing team who performed her brain surgery and immediate after-care. Then Jill was transferred to the stroke unit at a third hospital, her local one, for ongoing care.

On her arrival at her third and current hospital, we were advised that the plan was likely to be to move her again, to a dedicated neuro-rehabilitation centre, as soon as a bed became available. This was 3 months ago. Just over 4 weeks ago, Jill’s husband (Jill is lucid, but has a tracheotomy tube in situ and cannot communicate easily, so her husband is the main point of communication with the hospital staff caring for her) was told that there was categorically no funding available for patients from the stroke unit to receive care at the Neuro-rehabilitation centre. We questioned this.

Neuro-rehab funding

The NHS funding Maze

On putting this question to representatives of a number of NHS organisations, we discovered that an individual funding request (IFR) was required. This needed to be sent to the North East Lincolnshire Clinical Commissioning Group (NELincs CCG). Although the Neuro-rehabilitation Centre in question is part of the same NHS Foundation Trust as the hospital where Jill is currently a patient, the Clinical Commissioning Group for her area (NELincs CCG) only commissions activity at the centre on a patient specific basis.

Therefore, the consultant responsible for my friend’s care in her local hospital (Diana, Princess of Wales Hospital, Grimsby) needed to make an IFR before a referral could be made. Unfortunately, it seems that my friend’s consultant was initially unaware of this requirement. This is perhaps understandable, given the dynamic complexity of the NHS funding maze.

UK Health system organisation

We helped the hospital to make the request (Jill’s husband actually sat in front of the computer with a junior doctor at the hospital, to help fill out the online form) ten days ago, but the delays resulting from a lack of awareness about the requirement for an IFR mean that Jill had already been in the stroke unit for more than 2 months before the request was even submitted. NELincs CCG states that a decision in response to an IFR “will usually be provided within 40 working days of receipt of the request where all relevant information required is available”.

Through no fault of her own, the submission of Jill’s funding request has been delayed, and it could be another month or more before we find out if funding will be allocated for her to receive the care of which she has been in desperate need for 3 months already, and which doctors at her hospital and the neuro-rehabilitation centre are in full agreement that she requires.

Meanwhile, Jill remains in a stroke unit, which is far from the ideal environment to promote her recovery. Until her brain injury, Jill was not only a wonderful wife and friend, but a vital, productive member of society. We want her to have the best possible chance of recovering that vitality. Unfortunately, funding procedures are delaying Jill’s access to appropriate care. If funding is refused by the panel of three GPs in whose hands the decision rests, none of whom I believe have ever met Jill or specialise in neuro-rehabilitation following a brain injury, she may even be prohibited from receiving that care at all. We have no idea what happens then.