Huntingdon’s Disease – the Ups and the Downs…

Lisa’s Guest Opinion Column in the Gazette & Herald Newspaper – March 2014

As I am stood, bent over double, with tears streaming down my face there is a truly horrible moment when I think that I am actually going to vomit. It is rather unfortunate that I have just consumed the largest plate of food imaginable and it is at that point that M decides that it is time to launch into one of his hilarious tirades.

M is recounting a recent experience with a street fundraiser and his tale is so non politically correct that it is off the scale. He manages to not only reduce me to a state whereby I am hiccupping with laughter but he also ensures that I am totally unfit for any kind of professional interaction with anyone else in the drop-in session for a rather long time.

However, on the flip side, there are times when M comes into the session and my heart breaks with sorrow at the state that he is in.

M has been diagnosed with Huntingdon’s disease and since we hadn’t experienced anyone affected by this condition before, we had to undertake background research very quickly in order to understand the noticeable change in his behaviour traits.

Huntingdon’s disease is an inherited condition that is a slowly progressive and interferes with bodily movements, but it also very significantly affects awareness, thinking and judgement and leads to changes in behaviour. The most obvious physical symptoms displayed by M involve a general stumbling around and a lack of co-ordination to his leg muscles, along with a slurring of speech and short term memory issues. Rather confusingly, to the general public, he just appears to be simply under the influence of alcohol.

He is also developing worsening cognitive and behavioural problems and these are the issues that are currently causing the most distress to him. It’s like the filter between his brain and his mouth is totally absent and he just blurts out the first thing that comes into his head, no matter how non politically correct, shocking or even offensive it might be to the other person that he is interacting with. And M’s vocabulary is also getting worse.

“My language is terrible and they just think it is an excuse”.

It is this part of the condition that is currently getting him into the most trouble. Each week M will come into the drop-in with another tale regarding his antics and every time the story involves the same outcome of being arrested and charged. A consequence of which is that there is currently a mountain of outstanding fines piling up and since M is on benefits and unable to work there is no way that he is going to be able to pay them off in the foreseeable future.

Even though M wears an official card around his neck stating that he has the condition, with a brief explanation of his symptoms, he is still finding it very difficult for people to understand the disease. And he knows that it is only going to get worse over a period of time, since he witnessed the deterioration in his mother’s health from an early age. He states that at the age of 10 he knew that she was showing the first symptoms.

“All other mums were doing mumsie things and she just seemed a little bit distant at the time”.

He says that he spent most of his time around his friends’ house since

“her cooking was a shambles”

Looking at him, and the way in which he has already deteriorated over the last 12 months, I wonder just how bad he is going to get and how long it will take until he needs fully supported accommodation.

I truly hope that he will not allow this horribly debilitating disease to impact on his rather special personality and that I will be continuing to cry with laughter for a long time to come.

Posted in Alcohol, Benefits, Charity, Chippenham, Drugs, Health, Homelessness, Mental Health, News, Wiltshire | Tagged , , , , , , , , , | Leave a comment

Feedback from a specialist drugs & alcohol worker on Doorway

 “Doorway continues to improve and grow. As a drugs and alcohol agency worker who attends weekly I feel we are able to engage people who are difficult to reach and we regularly take referrals for people who want help with their substance misuse, signpost and give advice and information.

Doorway is a safe and efficient project, well managed and effective. It provides a co-ordinated and positive meeting point for all kinds of people, vulnerable and otherwise.

The sense of community it engenders provides much needed solace to the isolated.

Workers and volunteers have a non-judgemental and friendly approach that enables people to feel good about asking for help.

It’s a one stop shop for a person in crisis who can access help with housing, employment, substance problems and much more.

To have so many kinds of people, some of whom can be volatile, meet and eat in the same space is an achievement to be applauded.

I want a similar, smaller project in my home town to model itself on Doorway which to my mind is a model of excellence and should be rolled out across the land as part of a solution to the increasing problems of our age.”

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The Women Talk About Adoption

Guest Opinion Column published in the Gazette & Herald newspaper – February 2014

Time never stands still at Doorway. Not only are the lives of our guests constantly changing but the very fabric of the organisation is also developing, adapting and evolving. We are always looking at ways in which we can improve on the services to our guests according to their own changing needs.

And so, in June 2012 we launched a new initiative, a women’s group (separate to our main open access drop-in sessions) where we could provide a safe and supportive environment for women with complex needs to express themselves through a variety of artistic activities.

I think really, my main objective was to allow women to find a space where they could abandon the masks and barriers that are so often set up as a means of defence and self-preservation against the men in their lives. We had found that so many of our female guests were victims of both physical and mental abuse and their ongoing support needs tended to get overlooked in our main drop-in sessions, sometimes due to the quietness of their nature but very often also due to their dramatic displays of aggression, anger and frustration.

By offering them a separate space we were able to encourage them to slowly start trusting each other, to open up and share their life experiences and their histories with each other.  We quickly found that the women are remarkably less guarded and, whilst knitting or being creative in other ways, they feel more comfortable sharing who they really are, the person they were before they became homeless, substance dependent or with complex mental health issues. Photos have been brought in and shown – “this is who I was”; “this is where I lived”; “I was beautiful once” – and their emotional stories come tumbling out.

Various subjects tend to come up in conversation each week, naturally and fluidly, without any previously conceived remit or requirement for a resolution or outcome. And these are the conversations that can be emotionally devastating but also simultaneously have a very strong element of healing involved.

One such subject recently discussed was the issue of adoption, although from the dual perspective of both being given up for adoption themselves (bearing in mind that this occurred decades ago) and also giving up their own children for adoption.

The results were extraordinarily powerful. We were giving the women a unique chance to express their rawest emotions and the comments make for difficult reading. As a mother of teenage boys myself the experience has given me an insight into emotions I could never imagine.

One woman stated that she felt like she was programmed to over care for the children that she has now failed by giving one up for adoption. By over caring she had pushed them away as well.

“If you have been given away, had a bad time and then lose a child how do you understand all that? It F**ks you up.”

“What can you say to a child you gave up and now is grown up? You loved them before and you still love them but you don’t know who they are now.”

All of the women who spoke that day experience ongoing complex issues and most have endured very difficult childhoods themselves. Many had been placed in care or adopted. The relationships that they have all subsequently had, with either their parents or the men in their lives, were challenging and extremely abusive.

“You become an adult and crave the childhood you never had with you birth mother / father, especially if it has been a very difficult relationship with the adopted family.”

And so, 20 months on from the launch of the women’s group, we can look back on the development of the group and recognise that although it has been a huge learning curve for everyone involved – guests, staff and volunteers – it has also evolved into a unique and very special place.

Additional quotes not included in the original newspaper article on being given up for adoption:

“Why wasn’t I good enough to be kept, what was wrong with me.”

“The knock on effect is never feeling good about yourself and then spoiling your own kids to get the love you’ve never had.”

“Just not understanding why you were given away.”

Additional quotes not included in the original newspaper article on giving their own children up for adoption:

“You know it’s for the best but it doesn’t mean that you don’t care and those people who think you’re rubbish need to be in that state and then they might understand why it happened.”

“More respect to a mum who is able to let that child go if they know it will be better off.”

“Forgiving yourself is the hardest part and for mums you never do and then you have more children you just feel you’re no good at it.”

“Birthdays and Christmas are the hardest time. That’s when you focus on what you did and you don’t think that you were a good person for doing it or most people don’t. I know I think I am a rubbish mum.”

Posted in Adoption, Charity, Chippenham, Mental Health, News, Wiltshire, Women's Group | Tagged , , , , , | Leave a comment

Social Exclusion – Guest Opinion Column published in the Gazette & Herald newspaper – January 2014

As Doorway celebrates our tenth birthday this month it is worth looking at why there is a need for the organisation to exist in the first place and the common theme running through all the different stories of our guests is that of social exclusion.

Social exclusion is formally defined as “exclusion from the prevailing social system and its rights and privileges, typically as a result of poverty or the fact of belonging to a minority social group”. Or it can be neatly summed up with the phrase “the failure of society to provide certain individuals and groups with those rights and benefits normally available to its members, such as employment, adequate housing, health care, education and training, etc”

The Joseph Rowntree Foundation publishes reports annually on the monitoring of poverty and disadvantage across the UK and their 2013 report states that in 2011/12, 13 million people in the UK were living in poverty and for the first time more than half of these people lived in a working family.

That’s a working family living in poverty. Not a family on benefits as portrayed by the media as scroungers. And there is no financial incentive for a family to stay on benefits either since according to the JRF “the level of benefits for an out-of-work adult without children now covers only 40 per cent of what the public considers to be a minimum standard of living. For families with children this figure is no more than 60 per cent.”

In a news article this week, as a response to the screening of the controversial Channel 4 documentary series “Benefits Street”, the Chief Executive of a Birmingham Housing Association stated that “The proportion of housing benefit claimants who are in work is rising and fast approaching 1 million. These are the people who work but, because of low pay, still claim housing benefit because wages are not keeping up with the ever-increasing cost of living. Around 90% of new housing benefits claimants are already in work – in a range of jobs.”

Sociologists state that there is a clear link between levels of social exclusion and crime rates. It’s not really rocket science – if the socially excluded population cannot meet the materialistic and  financial status promoted by society then people are likely to resort to illegal means (crime) over more legitimate ones. And on the bottom level if you can’t afford to feed your family then you are simply going to try and come up with another means of just getting by…

But what happens when someone really wants to turn their life around and get a second chance? There are a number of our guests who are stuck in a pattern of behaviour and actually want to make significant changes to their lives. As one of our guests stated, rather eloquently, very recently:-

“I have not done anything constructive within the parameters that society deems normal, for such a long time, I don’t think I am now able.

Having not worked for many years or been a part of a group of peers other than addicts I feel that trying to fit in and be ‘normal’ is something that I can no longer do.

I feel abandoned because I cannot escape my past. I want to move forward but I am afraid to. One can only take so much negativity and I have had my fill.

It is worse because I am more than able to do what is required of me if only I be given the opportunity. Yet any chance seems to elude me. No matter how hard I try.”

The problem is that he really wants to turn his life around but he is faced by the ongoing issue of social exclusion. And that is where the work of Doorway is so critical, we exist in order to support him, and all the others, whilst they continue their struggle to be more inclusive in society.

Posted in Alcohol, Benefits, Charity, Chippenham, Drugs, Homelessness, Mental Health, News, Welfare Reform, Wiltshire | Tagged , , , , , , , , , , , | Leave a comment

Doorway Sponsored SleepOut 2014

Lisa's photos SleepOut (3)On the night of Saturday January 25th, Doorway once again held a sponsored SleepOut, in the churchyard of St Andrew’s Church, Chippenham, venue for the previous SleepOut in 2012. I talked in the blogpiece about that SleepOut about the debate around the role of Sleepouts in fund and awareness-raising, so I shall not repeat myself here, except to say that the naysayers  seem to have quietened down a bit. Unless I’ve just not been listening…. What we at Doorway feel is that this event has been once again brilliant at raising awareness locally, and we are extremely grateful for the 21 hardy souls who slept out this year, and to the many who helped to make the event happen and to run safely on the night, raising £6,000 and rising, the last that I heard.

The weather had been awful leading up to the event – very wet, windy, and often cold. The edict was issued by the organisers that plastic sheeting would be required under the supplied cardboard boxes, as the ground was so sodden. In the end, the weather was very kind, in that it didn’t rain overnight, and it was cold, but not as cold as previous SleepOuts.

The event started with a special Homelessness Service in the Church, where it was a delight to welcome back to Chippenham one of the founders of the drop-ins which evolved into Doorway, Major Mary Wolfe, now of the Southsea Citadel of the Salvation Army.

Mary Cleverley, Major Mary Wolfe, Lisa Lewis

Margaret Cleverley, Major Mary Wolfe, Lisa Lewis – photograph by Diane Vose

After this service, at which Major Mary spoke about the birth of Doorway, and the World Music Choir sang, refreshments were enjoyed in the Church Hall, and the choir again treated us to their beautiful sound. Doorway CEO, Lisa, then welcomed all participants - “we’re never going to replicate what life is really like when you’re rough-sleeping tonight, we do realise that, and everybody’s going home to a warm bed tomorrow, but we are highlighting a really very serious issue in Wiltshire, and raising much needed funds for Doorway, so I’m extremely grateful to you all for coming out tonight”.

Marc Allum, of BBC’s Antiques Roadshow, then read a ‘bedtime story’. He said that he had decided against a horror story, as “I thought it was probably scary enough that you’re sleeping on top of dead people, without adding to that. So I decided to read you an excerpt from a book called “Sorcerer’s Apprentice” by Tahir Shah.  This book deals with a lot of poor people in India, and the way they scratch a living, about the way they have to survive, and the way they have to exist by making the best of what they’ve got”. The final words from the extract were: “As they say in Kolkata, “Ak janar chai, anwar sona” – “One man’s waste is another man’s gold”. Marc added: “In some ways, that sort of sums up Doorway – you’re able to make a lot, sometimes out of very little. And long may it continue.

World Music Choir; Marc Allum; Mary Q in 'sleep attire

World Music Choir; Marc Allum; Mary Q in ‘sleep attire’

And then it was time for the ‘sleepers’ to settle, with the ‘watchers’ staying up all night for site security, unlocking the door for toilet access (yes, we know, real rough sleepers don’t have toilets available), ready for crises (thankfully, there were none). The St John Ambulance were also kindly in attendance all night, completely free of charge, as at every previous SleepOut. We really are most grateful.

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Lisa's photos SleepOut (30) collage

(Some photographs courtesy of Diane Vose of the Gazette and Herald)

'The Watchers'

‘The Watchers’

When the sleepers emerged at around 5ish, the effect was, as stated below, rather reminiscent of a ‘zombie’ film. the ‘survivors’ were counted up carefully, and this time, unlike 2012, we didn’t miss one still asleep in their box! Bacon sandwiches and veggie alternative were served with warming cups of tea and coffee (thanks to those who came in early to produce these), and people shared their experiences while all was tidied up. Then, unlike real rough sleepers, we all went home to warm houses….

Some words from the ‘sleepers’:

Andrew Carnegie (featured in the Gazette and Herald before and after the SleepOut):

   “It was an extremely well organised and friendly event – you had the impression that how this was is how Doorway is, open, friendly and welcoming. The wind had boxes blowing in all directions when we arrived but the design [of my bed] was not affected even without my large bulk holding it down. Comments regarding my snoring showed my design did allow sleep whilst others avoided it. Having exited due to a wasp attack at 05.30 watching everybody slowly emerge from behind headstones was like watching ‘Zombie Apocalypse’ or ‘Rise of the Living Dead’. What was clear was that after one night-which was nowhere near as stressful/cold or disturbed as it could have been- I returned home hungry, tired and not functioning at 100% capability. Living outside at this time of year will gradually disable a fit man, a vicious circle spiralling into despair fighting for help from a system evolving to deny assistance for as long as possible.”

Some others:
   “I was quite euphoric on Sunday but my night with very little sleep caught up and it was interesting to consider that some folks have to get by like that all the time. Thank you so much to you and all your helpers for a brilliant experience - you were all so friendly and the event was so well organised that I felt totally safe and even more committed to support ‘Doorway’ than I had at the start. The service was special because it was inspirational to hear how the charity had been started and how it had developed and grown. I loved the choir – it was special that they gave up their evening to sing for us and provide entertainment. Marc Allum was fun.

   “Didn’t get any sleep, but it was quite comfortable, I didn’t expect to have any sleep, but found it quite comfortable, and just listened to the sounds of the night. Surprised by the number of cars going by, all through the night. Don’t know where they were all coming from – clubs I suppose.  But quite a peaceful night, really.”

“My back will never be the same. I slept. I DID sleep. I had my first experience of claustrophobia, which was fairly unpleasant. I thought “I’ll have to be fairly quiet here, but I’m now fully trapped in my sleeping bag, I’m  not sure which way round I’m facing”. I wasn’t too cold, which was OK, sheet stayed on. Kind of gave me a sense of a bit of loneliness, of sleeping rough. And my heart goes out to folk for whom this is their normal way of life. I’ve got a good friend who spent 16 years on the streets, and probably spent many nights in a similar fashion. Particularly in a churchyard, gives you time to really think about it”

“I have spent the night in a box alongside about 20 other people, that was a comfort in itself. I am now home warm and cosy. Whilst I was in my box I was thinking about what if I was actually doing this every night, that is a horrible scary thought ……. my heart goes out to people who endure this existence. Everybody deserves a door to walk through, nobody should be homeless”

During the night and at the end of the night

During the night and at the end of the night

“We were really really fortunate with the weather, and putting our boxes together was great fun, and seeing everybody else getting prepared for the evening. Slept relatively well, tossing and turning, but kept very warm, and it was very comforting to hear the Doorway guys coming round to check that we were all alright. It did make me think actually that this wouldn’t be a lifestyle that I could sustain, especially if the weather was worse. I did have a little think during the night about what it would be like, because my [relative] has been homeless………………..[deliberate break in recording]….

“…..Yes, it did make me think about circumstances a little close to home. To think how people have to endure difficulties because that’s the only option they’ve got at the time, so you can understand that especially in the days when the light comes up early and goes down late, how long the day can be, and how exhausted you must be at night time when you’re just going to sleep, and how lonely it has to be if you’re just out there on your own, and I think we were really lucky with the fact that we had sort of  four-star cardboard boxes, and that’s not necessarily a resource that is available to everybody, so, yeah, it made me think.”  And on-site security” Yes, on-site security…” “I was trying not to go around too heavy-footed, I was trying not to disturb…” it was quite comforting, and I felt quite reassured really, and actually to know that you’re safe….” “If you were rough sleeping and heard footsteps, it’s probably more of a threat than anything…” yes, it must be very frightening. So it gave me an insight, but I think that’s only scratching the surface.”

Now my [other relative] will be in a similar situation very soon, when he gets out of prison. He’s been in and out. The difficult thing is, for families of people that are homeless, it’s not always as easy as scoop the person up and bring them home. Because we did that, with my [relative], and it was just horrific, and it didn’t work for her, and it didn’t work in terms of the family unit, and made somebody extremely ill in the process. And so this time round, the hard place, the hard pressure of do you scoop up and bring home is just the most..it was the worst thing ever….in the end I think the right decision was to say ‘no’, so actually then she was faced with the fact she’d have to make some decisions for herself. Someone said it’s like falling down  a pit – if you always put that mattress at the bottom, you’re breaking their fall. I was just wanting to understand about homelessness and how people survive it all. And I’ve got a long way to go to understand it all still. I just figured that if there was just something I could do, I would do it.”

IMG_8237 (2)

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The Gazette and Herald write-up of the event – ‘Tombstones sleepout in Chippenham raises £6k for charity’

The Flickr photostream for the event will be linked in here soon….

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The Real Impact of Welfare Reform – Doorway Guest Survey & Report 2013

Introduction:

The Doorway Guest Survey 2013 was carried out between July and September of the year, and had a record response rate of 50 surveys completed. We hoped to record data about the service Doorway provides and also a snapshot of the impact of welfare reform at this current time.

There is a great deal of rhetoric surrounding welfare reform in the media. First, the narrative of reform being introduced as an efficiency measure that will continue to support those who ‘deserve’ it. Second, the frenzy around the narrative of strivers and scroungers which has seen an adverse effect upon communities in terms of social conflict. Often these narratives are not supported by stories from individuals who are experiencing the impact of reform, and are used to push a political agenda.

This report aims to provide an insight into how the welfare reforms are affecting the guests at Doorway: those who are homeless or vulnerably housed in North Wiltshire. Although the sample size is not big enough to make robust general assertions about the impact of reform, we hope to illustrate the rhetoric surrounding reform with stories from the real people who are experiencing it and who sadly are often overlooked.

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The first section of the report will provide a quantitative analysis of the data we collected. It will show figures surrounding changes in benefits over the past year and how these have affected our guests. The second section will take a qualitative approach to the data and will outline narratives of certain guests who have experienced major changes to their income in the past year. During the exercise of completing the surveys on a one to one level, many guests were keen to outline how they would organise the welfare system if they had a chance. Section three gives an overview of four of these suggestions and gives a platform to those who are part of the system to say how they would organise it.

Download the report here The Real Impact of Welfare Reform

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Bah Humbug to Christmas – Guest Opinion Column published in the Gazette & Herald newspaper – December 2013

It is getting more apparent, each year, that the twelve months between each Christmas period are getting horrendously shorter and shorter.

Whilst I can rightly argue that the festive marketing debacle starts earlier and earlier each year, there is still the point that I am obviously getting older and the whole “time flies when you’re having fun” comment really isn’t relevant to someone who has a job in my field of work. And I am definitely, therefore, getting grumpier and grumpier each time it comes around.

And so, as we all not only have to endure the chillier weather but also the annual festive retail hype, it is worth bearing in mind that this is an emotionally depressing time of year for many people.

Mainly because, at Doorway, we are hearing more and more stories of people who are already strapped for cash getting themselves into increasingly alarming levels of debt in order to buy Christmas presents for their children.

It is also worth remembering that many people in our local community will be alone at Christmas, without family and friends, whether they are homeless, struggling to maintain their tenancies or pay their mortgages. This is a very difficult time of year for many of our guests and whilst we try to make things just a little bit easier for them by giving them the extras, like boxes of chocolates or hand knitted hats and gloves, there is nothing that we can do to alleviate the basic loneliness or the financial worries.

Rather surprisingly, last winter we had a couple of people who would rather sleep outdoors in the snow than go into hostels overnight; one who had a private home with a mortgage and claimed no benefits but was unable to afford to turn their heating on, several who struggled to stay warm in tenancies and those who didn’t have enough money to eat properly.

This year already we are hearing stories of people who are having their benefits sanctioned for the next six weeks due to missing an appointment for various reasons including simply misreading a letter sent in the post. I’m really not sure how they are going to be able to cope over the festive period without any benefits whatsoever.

The only guarantee we can provide is that our drop-in doors are open, and we are offering a full support service, fifty two weeks of the year including through the snow and the bitterly cold temperatures that we have been experiencing over the last few years.

But opening each week is no easy task for a small charity in this economic climate. And there is a small team of people who work tirelessly, all year round, in order to ensure that the financial donations are continuously coming into the office from the local community.

One of our major fundraising events will be taking place at the end of January 2014 and involves members of the public spending a very cold night in a churchyard, amongst the gravestones, whilst enduring temperatures below freezing with very little except for warm clothes, a sleeping bag and a cardboard box. Our SleepOuts are deliberately held at the end of January to tie in with Poverty & Homelessness Action Week, organised by Housing Justice, and we have found that we are able to gain maximum publicity due to the ridiculous timing for the coldest weather possible.

The entrance to St Andrew's Churchyard for Doorway SleepOut 2014

Whilst there is much controversy nationally regarding SleepOuts we, at Doorway, argue that whilst we are not able to replicate the realities of sleeping rough, the event is a very effective means of gaining both media and public attention to highlight the fact that homelessness exists at all in rural areas. By sleeping out for a night we can raise the basic awareness and then go on to educate the public in the issues surrounding homelessness on all levels.

So even if you are unable to spare time or money to support a good cause then please consider spending a cold night in a graveyard and support Doorway by highlighting the plight of homelessness this winter.

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