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Hayward House: Interview with campaigner

anon@indymedia.org (Concerned of Notts) | 24.04.2011 17:23

In recent weeks news has emerged of plans to cut the daycare service at Hayward House, located in the grounds of City Hospital, Nottingham. A campaign to defend this service sprung up almost immediately. I interviewed Chris from the campaign to find out what was going on.

1) Can you briefly describe the services offered by Hayward House?

Briefly, no!  This is as brief as I can be!

There are three parts: education on palliative care; inpatient facilities; daycare.

Daycare allows patients with terminal illness to remain living at home for as long as possible, and provides them with a complete package of integrated care.  Patients are treated with dignity, respect and compassion.

Social care: patients, who are often lonely, get out to chat and meet others "in the same boat".  There are sometimes extra social activities, such as birthday parties and the annual boat trip.  Patients eat together, and the tables are always beautifully laid

Occupational care: patients are helped to do craftwork or undertake other pastimes, should they so wish.

Emotional care: proper help is available should patients or family need to talk over their problems.  Being with others in the same situation is very helpful to many.

Personal care: patients have access to e.g. help with bathing, relaxation techniques, massage, chiropody.  Aids to help in daily life are provided.

Community care: Hayward House has good links with relevant bodies in the community, and helps with making appointments and integrating patients' daily lives with their medical treatments, etc.  Carers at home get some respite from their 24/7 caring duties.

Medical/palliative care: all the other aspects of care are hugely important, but this is the aspect that makes daycare at Hayward House outstanding.  There is a highly skilled, trained, experienced and dedicated team of doctors and nurses to help with pain control and other aspects of end-of-life care.  Their work has made many lives worth living again when no other medical facilities have been able to help. 

Nowhere else locally can provide all these aspects together.

2) What is your personal experience of Hayward House?

My mum was a daycare patient in 1997, suffering from lung cancer.  When daycare could no longer control her pain, she moved into the inpatient wards. This was a familiar environment, without that 'hospital atmosphere'.  The idea was that her pain would be controlled and she would return home and to daycare, but sadly this was never fully achieved, and she remained an inpatient for about six weeks until she died on April 15th 1997.  I was allowed to stay with her day and night during her last few days.  All the time she was full of praise for Hayward House, staff and volunteers. 

She had moved to Nottingham to be near me, so daycare gave her the opportunity to make friends locally.  The treatment she received at Hayward House was exemplary, and because of this I decided to volunteer when enough time had passed for me to feel able to do so. 

I have been a volunteer driver for nearly ten years, taking patients to and from daycare.  Hayward House prefers to use volunteer drivers when possible, as it is more personal and we get to know each other.  Sometimes patients tell us things that they haven't told anyone else.  We often become friends as well as drivers, and it is a great privilege.

A few years ago, I also set up a cataloguing system for the medical library, and did some cataloguing for a while.  I have also fundraised - by cycling from John O'Groats to Land's End in 2001, and by selling books (ExLibris).

3) What exactly is being cut?

The wonderful, unique daycare service is being cut.  Apparently it will be replaced by "a different kind of service" - but no-one seems to know what that will be; and no-one has any confidence that it will be a quarter as good as current daycare.

4) When is this likely to come into effect?


Referrals stopped on April 1st, and complete closure is scheduled for September 1st.

5) How have other volunteers responded?

I haven't been in touch with all of them, but several are fuming - just like me - and want to campaign.  Organising is made more difficult because we all volunteer different days of the week.

6) What has been the response of residents?

Daycare patients aren't residents, and so far the inpatient wards aren't affected.  Daycare patients are devastated.  That's one reasons we volunteers are so angry - how can such ill people, whith wom we have become friends, be treated like this!  Some patients are so distressed they keep crying, and are physically affected - not being able to sleep, not being able to keep food down, losing weight, getting more short of breath than before.  Some patients are keeping going with determination, setting up their own petitions, and doing a variety of imaginative campaigning things. All patients are utterly opposed to this closure, and unfortunately this has affected the mood in the daycare room.

7) What has been the response of staff?


Staff are upset too.  They are an excellent team; once the team is ripped apart, it will not be possible to recreate that level of expertise and experience again.  I think staff are all the more upset because they are not able to campaign; I believe that many would like to.  They don't like
to see their patients being hurt by this.

8) Are any of the trade unions interested?

I don't know yet.  We as a campaign group haven't had time to go there yet.  I don't know whether nurses or other staff have done anything.  No unions have approached us about this.

9) You mentioned in your first article that staff were "not allowed to campaign on this issue." Is this an official diktat?

I believe so, although I haven't seen any documentary evidence.  Staff are very wary when discussing it with us, and have said they can't do more.  They must be worried about their jobs, and hoping to be redeployed elsewhere, perhaps in "a different kind of service".

10) What has the campaign done so far?


Well, we've posted on Indymedia!  We've handed out slips in the daycare with contact details, to help other volunteers, family and patients connect with us if they want to campaign.

We've set up a website http://www.savehaywarddaycare.org.uk/ .  Two patients have started their own petitions - one to David Cameron, and one to the PCT - so we've decided to keep both going, as they're to different recipients.  The one to the PCT has also been turned into an online petition http://shhd.epetitions.net/ .  Petitions have been handed out or left in the Oncology Department, at the Gedling hustings, at gyms, shops and everywhere campaigners go.  One cancer patient sat outside a charity shop for two hours collecting signatures.  We're encouraging everyone to write letters.  We've contacted MPs.  We've contacted the media - in fact, later on today we'll be posing for a photoshoot for the Evening Post (article expected about Thursday) and then we'll be interviewed by the BBC (TV news breakfast, lunchtime and early evening Wednesday; Radio 8am news Wednesday).

We're gathering information - e.g. by asking Notts Hospice (where patients are supposed to go after September 1st) whether they could accommodate the extra 100 visits per week; and by making FOI enquiries to the PCT to find out some statistics about Hayward House and the intended future of palliative care. 

I must make a mention of Councillor Mick Newton, whose help has been tremendous, with contacting MPs, the council and the media, and knowing the way around processes.

We're networking, trying to gather as much support as possible. 

11) What do you have planned over the next few weeks?


There's lots to do.  We hope to have our first meeting in May, then we'll have more coherent plans.  But some of the things I see need doing, and some of which I'll do, include writing to the PCT personally, putting forward all the arguments; helping patients without confidence in letter-writing to do the same; finding out the PBCs who will be replacing the PCT, and lobbying them; getting GPs on board; producing a flyer; distributing that flyer and the petitions even more widely; having a presence at Mayday and maybe the Green Festival; contacting the national press.

I don't believe the PCT had an inkling of what Hayward House daycare is all about.  I believe they thought it was just another day centre.  I promised one of my passengers that I would do all I could to stop daycare from closing.  If necessary, I shall have to think more creatively!

12) Have you been able to link up with any other anti-cuts campaigns?

Notts SOS.  Otherwise, we've only known about this for less than a fortnight, so there hasn't been time to do that much.  Add it to the list of things to do!

13) Have you heard anything from the Primary Care Trust (PCT) yet?

Only that they've received my Freedom of Information requests, and I should get an answer in due course.

14) What can concerned readers do if they want to support the campaign?

Have a look at the website - it's got a page full of suggestions.  Spread the word, write letters, circulate petitions, contact us and come to our meeting when it's announced.


anon@indymedia.org (Concerned of Notts)
- http://nottingham.indymedia.org.uk/articles/1151

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