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Bristol Adult ADHD Service 2 Year Waiting List: Letter to CCG

Monday, 17 February 2020

I’m afraid we were overly optimistic as progress seems to have stopped so today I sent two emails as follows:

First email:

I realise that everyone is busy but it has now been 3 weeks since I sent the list of dates for which we are unavailable for a meeting and I have not yet had a reply.

Do you know if any progress has been made in arranging this meeting with the CCG, [Clinic staff], members of the joint CCG and AWP ADHD Working/Project Group, and [seAp Advocacy]?

To date, it is 6 years and 10 months since the funding level for the clinic was set and it has been 5 years and 10 months since the then Bristol CCG recognised that the funding level was inadequate.

Furthermore, the Bristol Adult ADHD Support Group met on Friday, 14 February, and it rapidly became apparent that the waiting list (2 years and growing), without any doubt, is putting already distressed people at increased risk of harm. In addition, the group members already assessed strongly reiterated their support for the clinic as well as their high regard for the staff whilst also expressing concern that the ever increasing waiting list is now putting too much pressure on the service as a whole.

As a polite reminder, I have reattached my original letter of Friday, 6 December 2019; sent 2 ½ months ago. Everything stated in this letter regarding the CCG’s responsibilities as well as our offer of help still stands.

Please note, I have also cc’d Mr John Penrose, MP on this email since I understand he is making enquiries into the inadequate funding for NHS ADHD services on behalf of constituents and I am also his constituent.

Second email:

43 working days have now passed since you received my FOI Request.

During that time the deadline for the CCG’s response has been extended twice from the original date of Tuesday, 14 January 2020; first to Tuesday, 28 January (need time to finalise the response) and then again to Monday, 3 February 2020 (for review by a Director).

It has now been 10 working days since the CCG’s last deadline expired. Could you please, therefore, conduct an internal review into the handling of this matter. My original request for information can be read at the end of this email chain.

Wednesday, 22 January 2020

We’re making progress, slow inching progress, but progress nevertheless.  We filed a Freedom of Information request with BNSSG CCG on 12 December 2019 for documents they described in their minutes (discussions about the Adult ADHD service) but had not made available online. The CCG, in response, told us they needed more time to ‘finalise’ their response and they expected to release the information by 28th January.

As a result, we’ve asked that our meeting take place in mid February so that we have time to review the documents.  And we’ve listed the other people that the CCG needs to invite to the meeting ‘in the interests of transparency and because [the waiting list] is a very serious problem that needs an open and collaborative partnership between the CCG, AWP, and service users.’

Thursday, 9 January 2020

Since we filed our complaint with Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSGCCG) on 6th December 2019, some progress has been made as follows:

1.BNSSGCCG have proposed that they hold a meeting this month (date tbd) with us (service users), the ADHD Clinic staff, and others from Avon and Wiltshire Mental Health Partnership NHS Trust (AWP). We are now waiting to hear from all attendees.

2. The CCG have also sent a proposed agenda which needs some amendments.

3. We have notified Healthwatch Bristol, North Somerset and South Gloucestershire (Healthwatch BNSSG) about the problems with the waiting list and sent them a copy of our complaint. We will be talking with them tomorrow, and they will be investigating the issues around the waiting list. We have also been in communication with Healthwatch England who are aware of our complaint. Healthwatch England have said that they will assess and evaluate the results of Healthwatch BNSSG’s investigation for national implications.

Saturday, 7 December 2019

The waiting list for the Bristol NHS Adult ADHD Clinic is now 2 years (plus) for people living in Bristol. We weren’t sure what Bristol, North Somerset and South Gloucester Clinical Commissioning Group (BNSSGCCG) were doing about it, if anything, so we decided to try and find out.

First, here’s a little bit of background. Clinical Commissioning Groups (CCGs) were created in 2012 when the new Health and Social Care Act came into being and they opened their doors on 1 April 2013. The CCGs are membership bodies made up of the local GP practices and they are led by a governing body also made up of GPs some clinicians, nurses and lay people. The CCG buys (commissions) all the health services (physical & mental health) that we use within our local areas. For example, the BNSSGCCG has a contract with Avon & Wiltshire Mental Health Partnership NHS Trust (AWP) for the Adult ADHD service for all who it in the Bristol, North Somerset and South Gloucestershire Area.

Now before buying a service such as the ADHD Clinic, the CCG should determine the level of need in the community as well as the amount of funding they’re going to need for the service currently and into the future. In other words they need to plan for increasing demand They should also plan for future demand as people become more aware of ADHD and ADHD services. And this is where things can go wrong as it has done for BNSSGCCG.

In 2013, for whatever reason they didn’t plan for the number of people in the greater Bristol area who would need an ADHD service and they didn’t pay attention to the increasing number of people being referred to the clinic and they didn’t listen to the Clinic’s warnings. And now there’s a very long waiting list.

And now we go back to where we left off in the first paragraph of this post: we were going to do some research. We did, and didn’t like what we found, so yesterday we sent BNSSG a letter with an appendix  containing 33 pages of evidence. The appendix can be read here and the letter is below:

6 December 2019

Dr Jonathan Hayes, Clinical Chair
NHS BNSSG Clinical Commissioning Group
South Plaza
Marlborough Street
Bristol
BS1 3NX

Dear Dr Hayes,

Re: OPEN LETTER: Serious concerns about BNSSG’s handling of the Adult ADHD Service waiting list

I am the Chair of AADD–UK and the founder and facilitator of Bristol Adult ADHD Support Group; both running continuously for 12 years. I’ve contributed to the NICE ADHD Guidelines and Quality Standards and I’m a member of the NICE ADHD Implementation Group. The latter was charged by the Department of Health and Social Care with highlighting challenges and developing solutions for implementing NICE NG87 ADHD. Commissioners are responsible for enabling patient use of the Guidelines not only within the context of funding but also within context of their legal duties of eliminating discrimination, advancing opportunities and reducing health inequalities.

I am writing this letter on behalf of service users who potentially have ADHD as well as those who have the diagnosis. The Bristol Adult ADHD Service does not know that I am writing this but as a matter of courtesy I have sent them a copy. The number of people expressing distress about the length of the waiting list for the Bristol Adult ADHD Service is steadily increasing. Since I needed to understand the background to this situation, I read all available BNSSGCCG’s minutes and reports. And I now have very serious concerns about BNSSG’s management of the waiting list.

In April 2014, one of the CCG’s operational delivery projects for the ADHD service was to ‘achieve funding’ to resource its then current growth. Since that date, referrals have risen exponentially but the CCG left the funding at the 2013 level—despite receiving warnings from the service. They have also been underspending on ADHD services to help offset overspending on IAPT and mental health placement commitments. The Clinic staff from 2014 to date, continuously tried to increase capacity to match the ever-growing demand until it seems they could do no more. The CCG refused to increase funding and favourably compared the 2-year ADHD wait time (keeping ‘inappropriate costs’ down) with the 2-week wait time for Cataract surgery. Furthermore, there’s no evidence the CCG made any effort to understand the needs of people with ADHD. There’s also no evidence of engagement or involvement with patients. See Appendix A for details, comments (blue text), as well as questions for the CCG (green text) to answer.

The CCG’s decisions and actions means it is violating the principles, values and objectives as set out in their ‘Constitution’, their ‘Equality, Diversity and Inclusion Strategy’, their ‘Ethical Framework for Decision Making’, their ‘Procurement Policy’ as well as the ‘NHS Constitution’, the statutory guidance for ‘Patient and Public Participation in Commissioning Health and Care’ and the ‘Good Governance Standard for Public Service’.

Furthermore, these decisions and actions have potentially put the CCG at risk of being in breach of their legal duties to reduce inequalities, eliminate discrimination, promote involvement of patients and obtain appropriate advice as set out in the Health and Social Care Act 2012 and the Equality Act 2010.

First, I ask the CCG to review their decisions and actions in line with these principles, values and legal duties and to make amends. Secondly, I ask the CCG to answer my questions in Appendix A.

I have written this letter, however, not just to express my serious concerns and to ask for amends, but also to offer my help to the CCG. I can help the CCG understand the importance of a fully functioning Bristol Adult ADHD Service. Indeed, it is held in high regard by service users. Appendix C contains lists of service user comments extracted from the ADHD Service’s quarterly and annual reports (released by the CCG in response to a Freedom of Information request). I can confirm the compliments in these lists match the feedback I hear at support group meetings as well as those from my networks. If anyone at the CCG is interested in learning about the lived experience of ADHD, I can help with that too. In fact, I am willing to invite relevant personnel to support group meetings so that they can directly hear from others about their needs.

ADHD is a serious neurodevelopmental disorder that can affect about 2-4% of adults. It is complex and difficult to diagnose. Many adults who were not diagnosed in childhood or were misdiagnosed will have developed co-existing disorders which act to amplify the symptoms and increase the complexity of assessments and diagnosis. ADHD symptoms can cause significant impairment across all domains of adult life (e.g. interpersonal relationships, education and work) and negatively impact health-related quality of life. It is cost effective to fund appropriate and timely treatment.

Please respond by Friday, 20 December 2019. I am currently considering further actions.

Yours sincerely,

Appendix A: Timeline – Serious Concerns about BNSSG’s handling of the Adult ADHD Waiting List

Clinical Guideline (CG72) ADHD: diagnosis & management Update

NICE Guidelines are recommendations for the treatment and care of people with ADHD by health professionals within the NHS. They are based on the best available research evidence and their aim is to improve the quality of healthcare. The guidelines are also used to develop standards to assess the clinical practice of ADHD clinics and services and are used in the education and training of health professionals. They also help us, people with ADHD, to make informed decisions and improve communication between us and the health professionals. When a guideline is developed, organisations can register as stakeholders (AADD-UK is a registered stakeholder) which means that they are consulted throughout the development process.

The original guidelines (on the diagnosis and management of ADHD) were published in September 2008 and are now being updated. The update covers the areas of identification of risk factors, post diagnostic advice, non-pharmacological and pharmacological management and intervention adherence for children, young people and adults with a diagnosis of ADHD. It does not cover any other aspect from the previous guideline.

The consultation period started on the 6th September 2017 and will end on 18th October 2017 at 5 pm. The updated guidelines are expected to be published on 21st February 2018.

NICE accepts comments during the consultation period from organisations that are registered as stakeholders but individuals can submit comments by contacting the stakeholder organisation that most closely represents their interests. AADD-UK is a stakeholder organisation and will be submitting comments so if you would like to add your suggestions or comments please feel free to send them to us by email at aadd.org@gmail.com. Here is a link to the NICE website with more information about the ADHD Guideline update.

ADHD: Surviving or Thriving?

Here at AADD-UK we avidly followed the news about mental health issues during Mental Health Awareness Week.  We admired the bravery of those telling their own stories, we retweeted some general mental health links instead of those that only dealt directly with ADHD, all the while preparing for our 10th Year Anniversary by revamping our website. Then suddenly we realised we’d forgotten the elephant in our own parlour! So we decided to write, just before the week ended, our own position for Mental Health Awareness Week.. Here it is:

First, we thanked the Mental Health Foundation for hosting the week, and thanked them for commissioning the survey and consequent report “Surviving or Thriving? The state of the UK’s mental health.” The authors of the report wrote that despite “many areas of advances in human health we are not seeing these reflected in mental health. If anything, the signs are that we are slipping back.” They backed this up by shockingly disclosing that only 13% of those surveyed in England, Scotland and Wales had “high positive mental health” and that nearly “two-thirds of people say that they have experienced a mental health problem” and others were clearly “just about surviving.”

The authors further reported that those of us living with either low household incomes or  unemployment have worse mental health than those employed at higher incomes. 3 in 4 people at the lowest income level, 85% of unemployed people, 7 in every 10 women, 7 in every 10 young adults (aged 18-34), and 7 in 10 people living alone experienced poor mental health. Additionally, the authors quoted the “Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014” (published last year) which revealed that every week 1 in 6 adults experienced a “common mental health problem, such as anxiety or depression. 1 in 5 adults reported that they had considered taking their own life at some point.”

I sat in silence and reflected upon those numbers and felt an overwhelming sadness. So much unnoticed desperation and despair! Swiftly followed by anger; “Who can I blame?” “Where shall I point my finger?” You see, all this correlated almost exactly with our own experiences in the ADHD world.

It’s been almost 10 years since we set up AADD-UK with hope and optimism. During that 10 years, the National Institute for Health and Clinical Excellence (NICE) published ADHD Guidelines in which adults were included for the first time. Of course there was some initial resistance but over the years more and more professionals  became interested, more and more moved into the field, more and more research confirmed ADHD as valid (even the usual tabloid suspects now, tentatively,  report positive ADHD stories) and there are more ADHD services in the UK than the 3 that existed 10 years ago.

But all is not well! As awareness of ADHD grows, funding for ADHD services dwindles. Some GP’s, due to funding shortages, are reluctant to refer us to services.  In truth, not all of the ADHD services have enough funding to meet the NICE Guidelines. It’s even been suggested, in one known circumstance, that the Guidelines be disregarded. A couple of services have surreptitiously tried to close. Some have decided not to publicise their contact details for fear they’ll get more referrals than allowed for by their funding. Of course, this means that waiting lists are getting longer and longer; even up to 2 years long! It’s true that gate keepers and sign posters cheerily point us to psychological therapies suggesting we use them while waiting. But guess what? Yep that’s right! We’re shuffled onto the end of another waiting list where some of us must try not to listen to whispers about the low quality of the offerings. So, there we are, stuck waiting, struggling to cope with abysmally low self-esteem, hurting, lonely, barely surviving. What does this matter when it’s said that ADHD makes us resilient, that we’re used to hard knocks, that we’re survivors?  It matters because we understand too well that surviving is not thriving and that knowledge is painful!

And what about those of us who’ve been diagnosed and are taking medication? We’re all thriving right? Well not exactly. Medication is indeed all that some of us need. We can now concentrate as well as focus better. That helps us to, at last, move on and up. It helps us to feel relief as well as feel the joy of achievement. Some of us can even choose between seeing a consultant privately for follow-ups or waiting months to see the same consultant on the NHS. There’s a group of us too who, after a competent diagnosis of ADHD, don’t need any further help, not even medication. It’s enough that somebody listened, took us seriously, evaluated patterns underlying our difficulties, and found a way to help us understand. That’s all we needed to find our own way, to thrive and flourish.

Some of us, though, have been so pressured and battered by an uncomprehending and stigmatising life that the clarity that comes with medication also carries the aching revelation that our graceful childhood spirits have turned into cut-down and subjugated ghosts. Taking the right medication is not all we need.  Before we can move from surviving to thriving we need help, we need to rediscover our true spirits, our real potential.   Yet we’re stuck in the low income, or underemployed, or unemployed bracket. So we ask the NHS for help, get sign posted to psychological therapies, by the same cheery folk our clan members encountered, and off we shuffle to join the end of a waiting list.   There we are waiting, masks firmly in place (we don’t want pity), acting as if we don’t care but feeling worn-out, inside crying, mourning for our lost and trusting childhood.  We’re surviving and that’s all!

Still, at least the mere fact that we’re waiting allows us a bit more hope than those of us who’ve not been noticed. Some of us in this group are being shuffled from one wrong diagnosis to another wrong diagnosis, from one wrong medicine to another wrong medicine.  Never having our true reality heard or acknowledged. Some of us become disheartened, lose faith and sink into helplessness. And then what about those of us who learn to believe from early on that we are seemingly born to live life as a failure, never understanding why that appears to be our fate? All of us too are barely surviving!

It’s such a waste because every single one of us with ADHD has the potential to flourish. We would love to use our strengths and abilities to help others, to be a benefit. We don’t need much.  Just the right attention and the right support at the right time. Actually you know what? That’s not hard to provide!

Now I’m angry again so I’m jumping right off the fence and pointing my finger squarely at you, the Government. I’m pointing at you, Theresa May, as well as at you, Jeremy Hunt.  If you get back in charge, for goodness sake stop with your wasteful changing, privatising and building inequality into the health service. Instead, if you really care about helping people to thrive, helping the country to prosper (you do, don’t you?), stand back and for once look at the big picture.

The prevalence rate for children with ADHD is between 5 to 7%, of whom approximately 65% will continue to experience symptoms in adulthood. In other words, roughly 3% to 4% of all adults have ADHD. To make it clearer, about 1 in 25 adults have ADHD. That’s a lot of us! That’s a lot of us costing you a lot of money!

Leaving us unrecognised, undiagnosed, untreated or treated ineffectively, or pushing us onto waiting lists is costing you, the Government, a lot of money in lost tax revenue, inappropriate treatments, repeat visits to A&E, clearing up after our accidents, looking after our brothers and sisters in prisons, and so on and so on (you want evidence, ask and we’ll give it freely). It’s cheaper, far cheaper, to increase NHS mental health funding so that all of us can receive proper help! We want to use our strengths, abilities and skills.  We can use them to thrive and flourish!

And here’s a final note, the need for mental health awareness and funding did not disappear with the end of Mental Health Awareness Week.  The two thirds of people living in England, Scotland and Wales who’ve experienced mental health problems, including all of us with ADHD, are still here on Monday morning. Funding and treatment for everybody experiencing mental ill health is still needed and is still vital. With that, and with preventative care, all of us will thrive and flourish and so too will the country.

I’ve had my say for now! It’s time for you, the Government (whichever of you ends up in charge) to listen and act!

UKAAN Conference: ADHD in the Mainstream

The UK Adult ADHD Network (UKAAN) will host its 6th Congress from Wed 20th to Fri 22nd September 2017. This 3 day conference will take place at the Mermaid Conference and Events Centre, which will accommodate up to 600 delegates in a Theatre. The venue is situated between the City and the West End, on the North Bank of the Thames, and enjoys spectacular views towards the Tate Modern, Globe Theatre and the Millennium Bridge.

The conference is titled ‘ADHD in the mainstream’ to reflect the rapid increase in recognition and treatment of ADHD by adult mental health services. ADHD is a common disorder effecting around 5% of children and 3% of adults, with symptoms and impairments that overlap with other common mental health disorders. The role that ADHD plays in the health of many adults presenting with mental health problems is now much more widely recognised, yet recent evidence suggests that in many cases the disorder still goes unrecognised or treated. Our vision is to bring ADHD into the mainstream, so that all mental health professionals have the knowledge and understanding to diagnose and treat ADHD, in the same way as other common mental health disorders.

This meeting aims to raise the level of awareness, knowledge and expertise among health care professionals about people with ADHD and provide a better understanding of the persistence of the disorder, the development of comorbid mental health problems and the delivery of effective treatments.

The program will be delivered by prominent opinion leaders, clinical experts and internationally recognised investigators and is designed to cover key topics relevant to the diagnosis and treatment of ADHD from adolescence to early and late adulthood. The selection of speakers is particularly important so that the audience can hear directly from the most experienced professionals working in this rapidly developing area of clinical psychiatry.

Registration is now open on the UKAAN Website http://www.ukaan.org/adhd-in-the-mainstream/

 

The CATCh-uS ADHD Survey is now live

Please help us with a study from the University of Exeter. The project is about children and young people with Attention Deficit Hyperactivity Disorder in transition between children’s services and adult services.

One piece of the project, however,  is a mapping survey designed to find out which adult ADHD services are out there for young people with ADHD aged 18 and over to transition into from children’s services. This means that this survey can be answered by any person of any age who has knowledge of ADHD services, whether they have ADHD themselves or not and whether they are a parent/carer or not.

If you click on this link https://www.surveymonkey.co.uk/r/CATCh-uS_SU you will be guided to a page where you can tell the researchers about adult ADHD services in your area – or equally important the lack of adult services. The online questionnaire asks no more than 8 questions and should take less than 5 minutes to complete.

The survey is anonymous and your response will contribute to the creation of a map detailing adult ADHD services currently available in the UK. If you want more information about the project, the research team have a website where you can find more information: http://medicine.exeter.ac.uk/catchus/mapping/

Thank you very much for helping us with this project.

 

 

Close to an Act: how did the Health and Social Care Bill get passed?

AADD-UK has received permission from Mike Birtwistle, Head of MHP Health, to reproduce his analysis as to how the Health and Social Care Bill is now set to become an Act, barring any last-minute dramatic revelations. We asked for Mike’s permission because his analysis helps us to understand how these reforms might impact our access to assessments, diagnosis, and treatment for ADHD, and also helps us to figure out how we can address impacts resulting from these reforms.

Close to an Act: how did the Health and Social Care Bill get passed?

Submitted by Mike Birtwistle on 20-03-2012

It’s all over, bar some (more) shouting. The Health and Social Care Bill is nearly law but, after hundreds of hours of debate, thousands of amendments and countless controversies, what will it actually mean? And how on earth did it ever get passed?

Theoretically the Queen could decline to give Royal Assent to the Bill, as Unite suggested last week. However, barring any constitutional outrages or last minute shocks in the Commons, it will become an Act. And the Health and Social Care Act will represent one of the longest and most complex items of health legislation ever known. That it passed through a hung Parliament, in the teeth of such controversy is no small feat.

For better or worse, the Act will represent one of the most profound pieces of reforming legislation ever (alongside the Attlee reforms of the 1940s and some of the market reforms of the last Conservative Government). I believe all three sets of reforms have problems, but the scope of their impact and ambition is undeniable. Continue reading

ADHD: Transition from Adolescence to Adulthood

The UK Adult ADHD Network (UKAAN) will hold the 3rd Congress on the 29th June 2012. The theme will be ‘Transition of ADHD from Adolescence to Adulthood’. The conference will be located in Central London at Savoy Place, 2 Savoy Place, City of London WC2R 0BL

The congress aims to bring important topics on transition in ADHD to a wider audience. The scientific program will include five main sessions, with a panel and audience discussion

Clinical services for ADHD during the transition years from adolescence to adulthood and for those newly diagnosed as adults are developing rapidly. This meeting will address important clinical and scientific questions relating to ADHD and will be relevant to anyone interested in the mental health of people from the adolescent years through to early, middle and later adult life.

For more information and registration details for this important conference please go to the UKAAN website.

Get Involved in a New Government Disability Strategy

Brighton Adult ADHD Group has been invited to contribute directly to a new cross-government disability strategy. The Government has published a discussion document with questions and Brighton Adult ADHD Group wants to gather your views, to make sure we represent the experiences of people with ADHD in Sussex.

To share your views please come to our discussion event. We will have a speaker from the Office for Disability Issues.

Date:  Wednesday 7th March

Time:  18.30 – 20.00

Location: The Brunswick Room, The Brighthelm Centre, North Road, Brighton, BN1 1YD

Light refreshments will be provided

For further information please contact Caroline Williams on 01403 733931

We want to talk about practical ideas that will make a real difference to your life. The Government has asked us to focus on three areas:

  • realising aspirations
  • increasing individual control
  • changing attitudes and behaviours

We have made a questionnaire with questions relating to each area that can be downloaded here. It would be helpful if you could fill in your responses before coming to the meeting, and bring them with you. If you are unable to attend the meeting, please email your responses as soon as possible to mail@adhdbrighton.org.uk

We will send a report of our event to the Government. They will look at everyone’s suggestions and work with disabled people to publish a new strategy later this year.

If you want to find out more visit www.odi.gov.uk/fulfillingpotential

Update:Cambridgeshire’s denial of NHS treatment for adults newly diagnosed with ADHD

AADD-UK has not yet received an official response to our letter (see previous post on this subject) regarding the actions taken by NHS Trusts and Commissioning Groups in Cambridgeshire which restrict access to NICE recommended treatments for people who are diagnosed as adults with ADHD.  However, we notice that the new low priority policy for ADHD has been removed from the website for the Cambridgeshire and Peterborough Public Health Network and has been replaced by the words “Please note this policy has been temporarily withdrawn.” You can read this for yourself here.

Now we do realise that this removal could just be coincidence, and may or may not be a good sign.  But Cambridgeshire County Council, who also received a copy of our letter, has made a very positive move.  The Council’s “Adults Wellbeing and Health Overview and Scrutiny Committee” has listed under Agenda Item 7a (for their meeting on 8 February 2012) in “Committee priorities and work programme 2011/12” the following: “Provision of medication for adults with ADHD: The Chairman has received representations from individuals with ADHD on this issue.  It is proposed that the Chairman and Vice-Chairman, with the support of the Scrutiny and Improvement Officer, follows this up with NHS Cambridgeshire.”

Well done and a big AADD-UK Thank You to Councillor Kevin Reynold, the Chairman of the Committee!

The meeting of the Adults Wellbeing and Health Overview and Scrutiny Committee is open to the public so if you live in Cambridgeshire and have been affected by the low priority policy do please go to the meeting. The meeting is on Wednesday 8 February 2012 at 2:30 PM in the Kreis Viersen Room, Shire Hall, Cambridge.  More details are available on their website here.

And again, Thank You Councillor Reynold!

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