Reports on what's been going on since we won the first battle to Save Hayward House Daycare.

NHS/PCT and patient/volunteer meeting.

On Monday May 16th, some of us attended a meeting (one of five, instigated since the NHS u-turn) between NHS/PCT and patients etc at Hayward House, and there learned the latest in the making-it-up-as-we-go-along saga. 

NHS/PCT people said that no decision had ever been made to close HH daycare; there was only ever a proposal, for consultation!  They could not explain why patients had received letters stating that daycare was finishing, except that it was a dreadful misunderstanding.  A mistake.  And they were sorry.   But could not explain why this misunderstanding took about four weeks to put right, or why Dawn Smith (Director of Delivery and Performance) had responded to our campaign by telling the media that the “transferral” of daycare would be just hunky-dory (when apparently they had never decided to “transfer” daycare in the first place)!  All the distress was caused by miscommunication, and they hoped they’d learned from it.  It was always their plan to communicate directly.  Etc etc. 

NHS/PCT claimed that the proposals had never been driven by cost, but by a need to extend specialist palliative care.  But they have listened to feedback (that’s us!) and taken note.  HH will continue to provide specialist daycare, they say.  Referral will continue on advice of GP or consultant.  They said that referrals have restarted.  No existing patients will be transferred unless they want it, but there may be some change on how services will be delivered.

Challenged with the fact that there had been no consultation, PCT/NHS agreed, and said there should have been consultation.  It was always in their plan to talk to patients.  It was not in their plan to send out letters saying daycare was closing.  When asked why, if this wasn’t intended, didn’t Dawn Smith issue a rebuttal straight away; they suggested we move forward in the discussion, and pointed out they’d said sorry.

A patient pointed out that referrals had stopped on April 1st, a couple of weeks before patients were told Daycare was closing.  This was a step towards closure before patients were informed, let alone consulted.  PCT/NHS repeated that they’ve listened to what we’re saying.

PCT/NHS said that the PCT is taking responsibility.  They were told that we have no trust in them.  They replied that they were there to build trust.  They acknowledged that none of the other hospices, to which transfers were proposed, had medical cover.  Sarah Hewitt from NHS/PCT said “We’re not going to transfer patients.  We’re not going to do this any more.”  It was only ever a proposal to transfer people who don’t have the necessary level of need.  (Everyone at HH has high levels of need.)

PCT/NHS were challenged on why they had never visited HH to see what goes on there before formulating these “proposals”.  They claim they had visited.  We are doubtful that they have,  have no evidence, and have been told the contrary.  A carer asked why Andrew Kenworthy hadn’t been to see what happens at HH.  One of the NHS/PCT claimed she had been involved since 2007.

A doctor explained that staff are experienced in caring for cancer and motor neurone disease patients, and it would be more difficult for them to care for others.  Although there are great similarities in palliative care for all patients, experience with particular conditions counted for a lot.

PCT/NHS were asked whether any clinician had submitted in writing to the PCT any report in favour of daycare continuing.

Sarah Hewitt (NHS/PCT) stated that the campaign showed how valuable daycare is, especially its medical importance.  The impression was given that they hadn’t realised this before, somewhat counteracting their claims to have visited and found out about HH. 

The plan for the future is to hold workshops with patients, volunteers, family, carers and campaigners (specifically mentioned) some time in the late summer, to feed all views into future proposals  on redesign.  (This makes “redesign” sound inevitable.)  Everything will be looked at by service users.  There will be letters asking for contact details of anyone interested in being involved.

Again, we were told:  ” We’re not dishonest, we’ve been poor communicators.”

Tuesday May 17th and the media.

Radio Nottingham played recordings of three people, who had been interviewed the night before, soon after 8am, and then there was a live interview.  This highlighted both our delight that daycare has been saved for now, but also uncertainty about the future and the preposterous notion that patients had had eviction notices as part of a "communications error".

BBC East Midlands Today featured the reprieve of daycare in the evening news, but made it look a bit like a place where people go for a chat and to do some pottery.  They didn't mention the medical care given to patients.  Spokespeople from NHS/PCT didn't make themselves look even slightly credible or competent.

The Evening Post featured an article and another letter.  A number of letters and a few articles have appeared since the campaign started.  The SHHD website has links to them.  Another feature is likely to appear soon, probably either Saturday 21st or Monday 23rd May.

We're delighted that the campaign has won the first battle - and so quickly, too!  Current patients will keep their service, and that's a huge relief to us and to them.  But we feel it's imperative that we continue to keep a very close eye on NHS Notts and NHS City.  And we still want to know why the letters announcing the closure of daycare were ever sent out if it was all a "communication error"!!!!!!  There had been no consultation, and everyone who has something to say about this is urged to make a submission to the Joint Health Scrutiny Committee - please see the website.  (Last date for submissions: May 24th.)

Thank you to everyone who's supported this campaign.  Now there's the rest of the NHS . . .