Living with lung disease: When life catches up with reality and I'm overwhelmed by déjà vu.

On 21 May 2015 I did a post about being told the day before that I had 'established fibrosis of the lungs'. The news came as a shock, especially when I read that the average life expectancy after diagnosis is '3 years'. Since then I have done occasional posts about my condition. In early-June 2015, during my visit to the City Hospital, I was asked how long I had had a heart problem? In the space of 3 weeks I learnt that I had an incurable lung condition and a heart problem. Scans of my lungs and my heart in the weeks after resulted in my heart condition taking priority and I blogged about that as well (2017 looks good). On 23 February 2017 I blogged about life going on hold as I prepared for open heart surgery four days later. I did a post-op blog on 6 April 2017. I left my health alone until November just gone, when a chest infection hit me hard, which I blogged about on 9 November (link here).


What I have is Ideopathic Pulmonary Fibrosis (IPF), no symptoms as yet but my lung capacity measure has fallen from 90% in 2015 and 2016 to 86% post heart op in 2017, then on Thursday I learned that I am down to 81% and have been referred to a local twice weekly 6 week exercise and assessment programme (dates awaited and which my consultant says 'will be hard work') and in May I will be prescribed one of two medications which might help delay further scarring of my lungs. I have had nearly 3 years to come to terms with my fate, but I was told very early on that progression can occur rapidly, so I have to hope that it will slow down. 

The point of telling you this is because logic says identifying potential lung problems should be routinely part of examining all chest x-rays (if it was then so many would not be going unnoticed). There may be no cure or guaranteed methods of stabilisation as yet for ILD etc. but the longer sufferers are aware of the condition (like me) the better, and, and it must be better for medical teams too.  More data should lead to better outcomes - which is why screening really matters!

I should add that I have never smoked and my heart problem was one I had lived with from birth. My surgeon said, jokingly, it was a good job I'd never run for a bus. Today I feel as if I have been here before, but this time I know it will pass and I will get things into perspective again.

The medication I will almost certainly be prescribed in May is rationed by NICE (National Institute for Health and Clinical Excellence). Your lung capacity has to be between 50 and 80% to receive the medication. The British Ling Foundation has objected more than once to the ban, pointing out that PLF sufferers have a prognosis worse than many cancers. You can read the BLF press release here  dated 9 June 2017. Being on the prescribed the medication will, at best, extend my life a couple of years before I die like my fellow sufferers from suffocation.

In September 2017 BLF published a 56 page report — A map for better care: making effective care pathways for people with interstitial lung disease (Click here for link). It is plain common sense. The report catalogues NHS and other shortcomings in the health and care system. It takes me back to a 1976 consultative document prepared jointly by health departments across Great Britain and Northern Ireland:

As a report and a set of recommendations it has never been bettered in my view. Its signatories included Barabara Castle and Merlyn Rees. Need I say more. At the time I was chair of East Birmingham Community Health Council and the British Pregnancy Advisory Service's Development Officer (1971–1983) and our focus was very much on prevention. Tony Blair and Gordon Brown's Labour governments poured money into the NHS and welfare without a plan and they abolished CHCs! Tories and Liberals, in contrast, have doggedly pursued cutting and privatising services (nor can Labour escape its active role in the latter). Time and again prevention policies have been ignored (flu jabs are an exception).

I have described myself in almost every post about my healthcare as 'one lucky bunny'. Listening to people and hearing their stories I wonder how people with lung disease manage to go undiagnosed for so long? 

The truth is that in the absence of a 'prevention culture' in the NHS people will not present with their cough or breathlessness soon enough and even if they do it may go undiagnosed. A conversation 30 minutes ago with my brother's wife provided a good example. How can a man who has suffered 3 heart attacks have his lung condition undiagnosed until the point when he can walk no more than a few steps?

PLF is not a gentle slope down which one falls until you can no longer breathe. It can come within weeks even with the best of care. Luckily Nottingham is a good place to live with PLF and I am grateful for that, but the time has come when one of the best ways I can help myself and fellow sufferers is to write about it, for make no mistake even in the absence of pain and discomfort (at the moment) I am a sufferer and so are those who love me!

An e-mail to my MP Anna Soubry — Why the NHS, housing (and general wellbeing) needs a bipartisan approach — and the reply

As  you can see I sent the e-mail below two weeks ago come tomorrow. In the absence of a reply I have to assume my MP has no interest in a bipartisan approach to our NHS and the even greater housing crisis which has bedevilled us for decades. In fairness Ms Soubry is not alone. Many other MPs, including Labour, want to keep the NHS and housing party political. It is not a view I've ever shared.

From: Robert Howard <robert@parkviews.org.uk>
Date: 9 January 2018 at 5:54:09 pm GMT
To: anna.soubry.mp@parliament.uk
Subject: NHS, housing (and general wellbeing) needs a bipartisan approach

Hello Ms Soubry

First, please forgive this long email, but please bear with me.

You write in your latest e-letter  'We really do have to grasp the challenges our NHS and social care system face. Extra money is important but so too are better systems and integration.' Over 40 years ago Old Boot, an English sheepdog character in the Daily Mirror strip cartoon 'The Perishers' said of a comment: 'As a statement it cannot be faulted for its accuracy, but it hardly throws a blinding flash of illumination on the dark mysteries of the universe (or in this case the NHS and social care).

I have long held the view that the NHS (and social care) needs a bipartisan approach involving politicians of all political parties, health workers, regardless of their status, the voluntary sector, related businesses and the general public, and that we need some kind of national convention to come up with a framework which supports local innovation and diversity alongside standards and a funding formula based on some kind of  health & care tax/charge, which also covers dentistry and eyesight (hearing is still part of the NHS, whereas the other two cost considerably more than many can afford).

I would also argue that housing needs to be considered as part of our health and social care system, because lack of decent housing impacts on personal wellbeing, and lack of wellbeing feeds into health needs big time (alcohol, drugs, diet, mental health and so the list could go on).

You are well placed to argue the case for a national convention to consider health care and related issues in the widest sense, perhaps suggesting that someone like Graham Allen could chair it (we live in an age when 'experts' rule when we what we need are sensible adjudicators who come to a problem not thinking they know the answers). He was an able honest MP with capabilities not utilised because he was a bit of a maverick - which is how I regard you.

Less than 12 months ago I had open heart surgery to replace a faulty aortic heart valve I was born with 73 years ago and 3 weeks ago my wife had a mastectomy after a recurrence of breast cancer after 11 years, so we both know the value and quality of the NHS first hand.

Between 1971 and 2006 when I retired I worked for two voluntary health care charities. BPAS Development Officer and Regional Manager/Head of Housing Management Advance Housing & Support (mental health/learning disability support), and chaired a community health council for six years, so I have a personal interest in health related issues and the local historian in me rate the provision of municipal housing in the 20th century as a greater achievement than the creation of the NHS.

I was lucky enough to grow up in the post-war period when, it can be argued, there was a (albeit competitive) bipartisan approach to health and housing by political parties. Public buildings all around us attest to this fact.

If I have a political wish for the future this is it!

Robert Howard
Beeston NG9 2PJ

PS. Brexit has to treated as a political beast with a life of its own and not one which we are all in thrall to at the expense of all else (ie. health, care, housing).

AN E-MAIL REPLY DATED 24 JANUARY 2018:

Dear Robert,

Thank you for your email and apologies for the delay in replying.

Anna very much supports the introduction of some sort of bipartisan commission or body for the NHS. At this stage Anna would be open as to exact nature of this commission and looks forward to considering proposals put forward by her colleagues and others. Anna sends both you and your wife her very best wishes, and would like to thank you for your work in this field.

Please be assured that this Government intends to significantly increase the number of houses being built. That is why the Government has committed to a total of at least £44 billion of capital funding, loans and guarantees to support the housing market over the next five years which will help deliver 300,000 net additional homes a year on average by the mid-2020s.

I hope this provides you with some reassurance.

Best wishes,

Emily
Emily Horner I Parliamentary Assistant to the Rt Hon Anna Soubry I Member of Parliament for Broxtowe.

Updated Beeston map includes The Hive on Union Street

My monthly update of my Beeston Vertical Map includes The Hive on Union Street which arrived as a collection of small retail units in October 2017 and had a launch in December, but I missed both — which tells you how good I am at noticing things even when I walk pass them!

Well, I hope this post makes up for my omission.

There is the A-Board pointing to The Hive down Union Street on Beeston High Road. The fact that so many of us walk by un-noticing is because A-boards litter the pavement. Why a shop with a frontage on the High Road needs an A-board is beyond me.

There is a case to be made for some kind of signage and additional publicity for shops in a shared space like The Hive which are really part of Beeston High Road.

Brighton has its 'Lanes'. Surely Beeston could come up with some innovative name to pull the shops on Villa Street and Union Street, for example, into the town centre proper, even the shops along Wollaton Road. They're all on my Beeston Map, so I'm doing my bit. 

Here is the entrance to The Hive, which is on the right-hand side of Union Street from the Beeston High Road end. It is set at a right-angle to the street.

Inside the entrance is this inviting shared foyer. Sorry I can't make my image larger (clicking on the image will make it larger).

I received a warm welcome from Laura aka Eliza Lou Handbags. The unit she shares with Not Too Shabby is a bit like a Tardis.

Hocus Pokus Rocks & Crystals is run by a lovely lady called Karen who was too shy to have her photograph taken. Lots of contemporary ear-rings and small items of jewellery as well The rocks and crystals are meant to have natural properties which may improve our health/wellbeing. If you want to light up a visit to Beeston with natural sparkle, thenHocus Pocus is for you!

The unit occupied by (Beeston) Arts Culture Tourism was unattended but open selling a selection of local books and works of art. The owner is Marysia Zipser who has been promoting Beeston for some years.

As I was leaving Charlotte of Not Too Shabby arrived and we had a long chat with Laura as well about Beeston's potential as a shopping centre. We spoke about Long Eaton, Ilkeston and Stapleford and the advantages Beeston has to offer. The new think-tank Centre for Towns points out that Beeston is not as young as Nottingham, (they argue that 'towns are ageing') but we disagreed. Beeston has growing numbers of younger people visiting and this reflected in the changing retail nature of the town — a pub and café culture continues to grow and that has to be good for young independents like Laura and Charlotte. I wish all at The Hive well. Go and have a look for yourself. You'll experience Beeston at its best!

Finally a sad note. Edward's on Wollaton Road has closed. It wasn't that long ago that is was one of Broxtowe Borough Council's award winning businesses. I hope there is some hope they might return in the bottom half of the notice in their door.

Centre for Towns website goes live

In the last couple of days the website of a new think tank, the Centre for Towns, has gone live.  One of its founders is Lisa Nandy, the Labour MP for Wigan, someone I have a great deal of time for.

The Centre describes itself as an independent non-partisan organisation dedicated to providing research and analysis of our towns and points out that cities receive a good deal of attention (and) that there should be equal attention paid to the viability and prosperity of our towns.

Anyone with an interest in Beeston's wellbeing and future should join the Centre's mailing list. Their first report is about the ageing of towns. Below is the report heading together with the executive summary which mentions Nottingham (which is one of the UK's 'core cities' so outside the remit of the Centre).

The report raises questions, especially in relation to Nottingham and how its tightly drawn boundaries distort data, plus the fact they treat Clifton as 'a town' (see their map below) distinct from Nottingham whilst not including Bingham or Ruddington.

Nottingham's ageing population I would argue doesn't move far. Susan and I moved from Lenton to Beeston, as have others we know. For all intents and purposes we are still in Nottingham if you ignore the local government boundary which separates the two places. These artificial boundaries distort reality. Add the towns ringing Nottingham with the city, then look at the data and I am confident that the Nottingham conurbation will not be deprived of oldies.

Within conurbations there can be distinct places which elsewhere, on their own, would be regarded as towns and should be treated as such.

I look at the map below and someone unknowing might see this as a recent creation, yet it isn't. A tram route, then a trolleybus route, followed by a bus route has been linking Ripley to Nottingham via Heanor, Eastwood, Kimberley and Nuthall since 1903. For parochial and political reasons this communal connectivity has been ignored and I hope this is something the Centre for Towns will look at — how towns and communities define themselves.

This is a captured webpage from the Centre for Towns interactive map. 

The website also includes lists of 'towns' and 'places' which show how the Centre has determined the size of a town, whether it is 'small', 'medium' or 'large'. Beeston and Long Eaton is classified as 'medium' whilst Clifton, Eastwood and Kimberley are 'small'.

I am a great believer in comparative data/ information, so I hope this will become a feature of Centre for Towns work. In other words comparing 'like' towns within each category.

I look forward to following the progress of the Centre for Towns with interest and wish it well for the future.

Nottingham Postcard Show

Always worth a visit:

Council Tax Exempt properties in Beeston and Broxtowe — a street-by-street list as at November 2017

The list of council tax exemptions on a street-by-street basis has been obtained by me making a Freedom of Information request to Broxtowe Borough Council at the end of 2016. The process was interrupted by me having open heart surgery at the end of February 2017 followed by four months recovery, then in November my being ill for three weeks and my wife Susan being diagnosed with breast cancer. All these  things have contributed to the delay, but I think it's been worth waiting for. Below are the totals for Broxtowe Borough Council area as at November 2017 summarised by location (my work):

BROXTOWE BOROUGH COUNCIL

TAX EXEMPTIONS AT NOVEMBER 2017

There is one important caveat. My 2015 summary of Council Tax exempt student properties in the Borough of Broxtowe (which can be found in the column to the right) was provided by the Council in February 2015 and the person who compiled the data for me has since left and the program used has changed. The changes between February 2015 and November 2017 are not what I was expecting:

I had confidently expected the total for 2017 to be higher than 2015. It is lower! The compiler in 2015, who no longer works for the Council, almost certainly used a different methodology to the compiler in 2017. The officer I have worked with suspects that the 2015 totals included adults who qualified for a 'student (council tax) discount' of 25% where two people live in the same property. This would help explain the higher 2015 totals.

Looking ahead to 2018 and future years, logic says I go with the person compiling the 2017 data. We have met twice and exchanged numerous e-mails and logic says that November 2017 has to be taken as Year 1 and that from now on data is collected and made public for November using the same methodology as 2017.

The list below is of Beeston Council Tax exempt student properties. I have created separate location lists for all the locations in the the above summary. The data from the Council is one long list with the first column showing the location of the street. I have compiled the above table of Broxtowe locations and verified it against the overall total on the Broxtowe Borough Council spreadsheet.

I leave it to you, the reader, to make what you will of the data. If you would like a PDF version of the full street-by-street list for Broxtowe please contact me.

There some quirks/anomalies in the Beeston list below, as I suspect there are in other location lists (eg. A Gladstone Street/Gladstone Street; Beacon Flats/Beacon Flatts; the use of Rd/Road results in separate entries and Ewe Lamb Lane has 9 location entries as Beeston, 8 as Stapleford and 100 as Bramcote. It is part of the Bramcote/Stapleford boundary, but it highlights how what you get out depends on what you put in!). 

Also, to place the data below I had to cut and paste and I have done it in haste — hence the difference widths. The entries are as they appear in the Council spreadsheet. I have added the column headings:

PROPS is for no. of properties in each street which could pay council tax.

EXEMPTIONS is the no. of council tax exempt properties in the named street.

STUDENT is the no. of properties exempt in the named street because all the occupants are in full-time education.

HIMO is the no. of properties in the named street registered as a House in Multiple Occupation. HIMOs can be occupied by groups other than students and may be paying council tax because the occupants are not exempt from paying council tax.

I have asked for a category breakdown of Broxtowe Borough Council 1,137 exemptions total. The Council has a discount and exemption webpage. Click here to see it. 

BEESTON COUNCIL TAX EXEMPTIONS AT NOVEMBER 2017  

Beeston Vertical Map update — a new Café, a name change and coming soon

A quick post. For the next month or more my priority is caring for Susan after her operation, so my posts will remain few, but I have picked up on some changes in the last week or so, so I have updated my Beeston map and here are pics of the changes:

The closed Odin Cafe has become Christine's Delights. The frontage has still to get signage, so there is an A-board on Beeston High Road outside the cafe.

It describes itself as a 'mediterranean style bakery' and what food I have bought from the cafe to take home for a light lunch has been tasty and the pastry crunchy. Early days yet. I wish them well.

The Dessert Haven 'opening soon' poster has been in the shop window across from The Coffee House for a few weeks now.

And lastly The Greyhound has morphed in The Jesse Boot with signage which describes the pub as a 'Craft Union Free House'.

I admit to not being a pubby person these days, but the makeover makes the building look like a bastion of sorts. A place of dark secrets.

Its new owners, the Craft Union Pub Company describe The Jesse Boot as a 'community pub'. I'm sure it's friendly inside. In the four years I have been doing this map there have been a number of re-namings (or is it re-brandings?). Sometimes the owners have remained the same. I still think of The Coffee House as Mason and Mason and The Rye as Jerome & Kern (I never could get the name right, but it reminded me of the songwriter). Then there is The Lounge Bar named after a local Boxer. I know the signage says Bendigo but I don't call it that.

I suspect a good few of us have our own names for places. I can see a map coming on...