Showing posts with label Peterborough. Show all posts
Showing posts with label Peterborough. Show all posts

Wednesday, 11 February 2015

Hospital Type Care in the Community


Unfortunately due to a growing list of antibiotics that Hubby is allergic to when he recolonizes  a nasty bug called Klebsiella in his urine he has to have a “Domestos” strength  I.V. delivered antibiotic to clear it up. This necessitates a trip via A&E to get a cannula fitted, check up on severity, blood tests etc. Then Hubby in theory needs to take up a hospital bed for up to 7 days for an IV to be given either once or three times a day depending on which one is chosen. Taking up a bed that someone that needs high level acute nursing input could justify having more than he.
Last time this happened we got the hospital bit done only having to stay one night, then we were sent home under the care of Medihome Ltd. This company employs nurses that mean that hospital care can be given in the community. We were very thankful to be back at home as being in hospital means difficulties getting edible food for both of us, being unable to shower Hubby, carting his special Roho air mattress with us, and generally trying to cope with his Spinal injury care in an alien environment. We loved this service, the nurses were some of the most experienced we had come across in a long time. Only criticism I would have is that the antibiotic was given via a bolus rather than via IV. I guess time cost money versus minor extra patient risk.

This time was different, we found that Medihome Ltd have not had their contract renewed to do this service anymore. We were unable to get to the bottom of what had gone wrong or whether it was purely a financial decision.  

We explained our situation to the hospital consultant who could see the sense of what we were saying, Hubby is safer at home due to his pre-existing conditions that make looking after him in a general hospital a nightmare for all concerned. He had a think about it and suggested we make use of the new Ambulatory Care Unit, going there once a day in the morning for the treatment. This having weighed up the alternative of a hospital stay we agreed to do.
So every morning for five days I got Hubby wrapped up against the chilly winter mornings, loaded him up in our specially designed WAV and off we went. Sounds okay doesn’t it? Well if only you knew what that means for Hubby, 15 minutes each way of pure pain when you are not feeling so good. It does not matter how slowly or carefully I drive, each speed bump, pot hole or road imperfection he felt as pain shoots through his spine. Then to arrive and find no disabled parking spaces adds insult to injury, as I have to unload him via our ramp quickly to get him inside the warm before his body temperature starts to drop, him having no body temperature control. (poikilothermia) .
This of course has left us asking why hospital type procedures cannot be performed in the community? Sometimes it is better for the patient.
Now a week later he has contracted Clostridium Difficile, no doubt from being out and about amongst germs that at home I try so hard to control.  So now I try and get his fluid levels up at home to prevent dehydration as of course that would mean another dreaded trip to the hospital for IV fluids.
 

Sometimes being treated at home for people with pre-existing conditions is not only more comfortable it is safer.

Sunday, 3 November 2013

What could #Peterborough do better to be more #Disability inclusive ?

What could the City of Peterborough do better to improve the quality of life for it’s Disabled citizens.

Following a Twitter conversation I was given the challenge to put into words my thoughts on what would make Disabled people’s lives in Peterborough a bit easier. I can only write from the perspective of what I know, so I apologise straight away to those that have disabilities that I only have limited knowledge of such as sight, deafness, mental illness, learning difficulties. I will leave it to experts in those fields to write an equivalent essay on what would help these groups.
A bit about my background. I am the full time carer of my husband who survived a high level spinal infection that left him as a partial tetraplegic. (Paralyses of all four limbs). I also have some knowledge of what is called Learning Disabled these days as my eldest brother lives with severe brain damage caused by a TB/Meningitis as a child, also my aging mother has reoccurring mental health problems and some mobility restrictions. When I worked, I was a professionally qualified manager having gained an MBA and worked in engineering in various safety (NEBOSH qualified ) and project management roles.  
So my paper will mainly cover the difficulties encountered by those that use a wheelchair to get about. It will cover the following areas, Out and About, Access to Leisure Facilities, Access to Medical Facilities, Housing, and finally City Planning.  

Out and About.
Living with and accompanying a wheelchair user out and about really opens your eyes as to how inaccessible many areas of life are still to this group.  Even when you go out solo you find yourself asking the question, if husband was with me how would we manage in this situation or that. We live near the Serpentine shopping centre, where we often walk/roll to in the good weather to do a bit of shopping or just to get away from our intolerable living conditions to have a coffee. The first obstacle for us is the extremely small lift that is the access point from where we live. Husband can not safely use the lift solo so I squeeze in beside him so that I can press the buttons for him. Coming out of the lift we often see many other disabled people having meals “at” the food court tables.  I have put “At” in inverted commas as many can not sit properly at some of the provided tables because they are not at a good wheelchair height and have design obstacles that do not accommodate their footplates. Most of the stores are accessible in access terms for wheelchair users, well until it comes to sale time, when the pile it up high and wide fever takes over and restricts access to many aisles.  Biggest bug bear with stores is those such as W.H.Smiths that regularly narrow down walkways with temporary sales stands and exhibits. Recently I was also shocked to find out that Tesco’s had not considered the needs of the wheelchair user when putting in its opticians, they can not accommodate the optical testing of people in wheelchairs. Again who signed that off as Equality Act compliant? May be that is the problem no one is checking for compliance. On a good note, Costa Coffee has removed a rail that ran the length of their counter making access for wheelchairs a lot easier. Having a cup of coffee is not easy as well, as many cups supplied are impossible for those that have weak hands to hold. Many weak fingered like to wrap their hands around the vessel putting their fingers through the handles for extra security. Many designs make this impossible either because the handles are too small or the cup gets too hot to handle. We always use a take-out insulated cup instead with the lid as it is safer. We have only been challenged once for doing this as some cafes differentiate between drink in and take out. The other general thing that people who design shops always seem to never take into account is the height of their counters, nothing worse for an independent chair user not to be able to reach the menus / information / cash payment machines that is available to everyone else. I recently went to Dominos in Hampton Village centre and it had the worst counter height I had ever seen, it was high for anyone under 5ft high. Also I noted that the doors were very difficult for a wheelchair user to open.

Toilets for the wheelchair user can also be a nightmare especially if you rely on someone to help you. Cubicles are often too small to accommodate wheelchair plus carer, even though they probably conform with all the statutory building regulations. We also find difficulties with many of the tiny sink types supplied and end up making use of wet wipes. Also no one seems to have thought about where do you put used urine medical devices that quite a lot of wheelchair users use to urinate. Many sanitary deposal bins say female tampons/pads only.  Just to note as well, many wheelchair users have also written about the inaccessibility of the new Dyson blade hand dryers.

Smaller premises in surrounding villages / suburbs of Peterborough such as small hairdressers and other independent retailers must start to think about providing ramps for wheelchair users to access their premises especially where they have a stepped entrance. Also information displayed outside saying what accommodations they have for chair users, i.e. I will come out to you, provide a ramp, etc.
Finally a Question, when at Peterborough Rail Station last, I asked myself, how would an independent wheelchair user get from the station to the rest of town. I think I came to the conclusion that it would be via a taxi or by a very long detour to find a safe place to cross the dual carriageway. The bridge is not accessible, only has a lift on one end. Hope they address this issue during the refurbishment of the station.

Lessons to learn:
  1.  Do not allow the signing off of lift sizes that will not accommodate a wheelchair user + carer. Also will it take an Ambulance trolley for medical emergencies?
  2. Restaurateurs / CafĂ© owners can a wheelchair user sit comfortably at your tables, rather than having to have food on laps or sitting sideways on?  You supply high chairs for babies so why not an adjustable height table for wheelchair users?
  3.  Shops do you have a counter height that someone in a wheelchair can access.
  4. There needs to be some people employed by the city of Peterborough to check new business premises have complied with accessibility requirements, working with them at the project planning through to completion stages and also help established businesses do better.
  5. Every store should do a trial run with store staff being placed in a wheelchair to see what the store looks and feels like from a wheelchair.
  6. Toilets need to have a medical grade waste bins and again someone needs to test run facilities actually sat in a wheelchair, asking questions as can I actually use the sink, can I easily get in and out , can I transfer safely from chair to toilet and back. I am also disgusted with the notion that some advocate sitting on the toilet and the sink being in reach to use while being sat on the toilet. Hygiene?

Access to Leisure Facilities.

Many of us marvelled at the achievements of the paralympians, their dedication and commitment to train and overcome their various limitations. Unfortunately just like the rest of the general public, people that are disabled come in all shapes and sizes. Many would benefit from being able to do some physical activity but are prevented from doing so because leisure facilities supplied in Peterborough, new and old do not make the bit of effort it would require to include everyone and make all welcome. My biggest complaint are the various swimming pools in the area including the hydrotherapy pool at St Georges, have failed to realise that not all disabled people can safely use a hoist or lift chair. If you have a disability that causes,sudden spasms, have limited use of your arms, weak trunk you should not be using such a device as there is a real risk of you falling, slipping causing injury. Instead you should be transferred into a lightweight pool chair and be ramped into a pool, then floated off the chair with the help of a carer. This would also benefit people who walk badly that find steps difficult, probably people with sight issues would also find this type of access easier. I know it would be very unsafe to try and put my severely brain damaged brother in a hoist as he would not sit still, scream the place down, he loves the water, but as he has got older his mobility has worsened meaning that he finds steps very difficult. Swimming / water therapy for mobility restricted people should be prescribed on a regular basis the long term health benefits are well documented but largely ignored by community services up and down the country including Peterborough. Gyms also fail to cater for wheelchair users that want to build up their upper body strength, putting in pieces of kit that can only be accessed via an inbuilt seat, rather than a removal one. They could also provide Velcro straps and other aids that would make lifting small weights safe for the disabled.

People who organise festivals and special events. Some expect all wheelchair users to be able to park on rough / sloped / gravel / grassed ground and still be able to decamp from their wheelchair accessible cars and traverse to the event. It even happened at the mobility show a couple a years ago when we went. Not everyone is a Paralympian and do not have the strength to do that.

Cinemas that insist on wheelchair users sitting at the front. No good for my husband with all the metal work in his neck he can not lift his head that far for that long.

There are still a lot of barriers to going out in a wheelchair, that as an able bodied person you would not necessarily think about.

Lessons to learn:
  1.        Pools should invest in removable ramps and light weight pool chairs.
  2.        Gyms to make as many pieces of equipment as possible accessible.
  3.     People that organise events should road test their facilities via a wheelchair.
  4.    Cinema owners should take out some seats at the end of some rows to accommodate wheelchair users at various sitting positions in the cinema.

Access to Medical facilities.

Most Doctors surgeries in Peterborough are for the most part accessible. Many do not have a hoist available for couch examinations. Many consulting rooms are very small with inadequate door widths for comfortable access. Waiting rooms sometimes fail to make safe waiting areas available for wheelchair users, too many standard chairs in the way. Also for those that can walk with difficulty, no higher seats to make getting in and out of easier.

Dentists & Opticians are for the most part inaccessible to visit. Even if you can get through the door, the consulting rooms are full of immovable equipment which make it impossible for the wheelchair user, unless can walk a little.

Hospitals in Peterborough are pretty accessible as they are generally built to take hospital beds in corridors etc. Many mistakes were made at PCH, some of which have been resolved as building work has been completed. Still there are very long corridors in PCH with quite a few inaccessible doors that create barriers to the wheelchair user. Using diagnostic machines for x-rays etc is still an absolute nightmare for the mobility impaired. The equipment being used is just not transfer friendly.   

NHS Wheelchair services were transferred out to a company in Essex. This has been an utter disaster from where we are sitting. They have such a huge area they can not possibly get to know their clients. They seem to be utterly thrown by clients that have the top level of specialised need. We have been trying to get a loan chair for over three months now that I dare sit Husband in for any length of time so that his oh so essential chair can be repaired. We have had drivers turn up without any tools, without head rest, leg raisers, chair recliner etc. Next visit will be the fifth attempt at getting it right so that we can get husbands chair fixed of his horrible noisy recline mechanism which sounds like it is going to fail at any moment. The cost of the petrol alone must be horrendous.

Private Physiotherapists in Peterborough generally do not cater for people in wheelchairs, some will do home visits. But at their premises no hoists. We used to go to a business run out of a house that had recently gone through planning permission that no one had said to them what about accessible access? We shamed them into buying a temporary ramp so that we could get inside through the high stepped door that is typical of domestic house builds. Inside all of the physios we visited no hoists or wider couches which the disabled usually need. Another just around the corner from us is in a relatively new business park, where there is no disability designated parking and the entrance door is impossible for an independent wheelchair user to use.

Lessons to learn:
1.       All of these businesses whether private or NHS need to do the wheelchair test.
2.       Someone at the council needs to enforce accessibility at the planning stage, for both refurbishments and new builds.
3.       Peterborough NHS needs to take back its wheelchair service.

Access to Housing.

Unfortunately people who are unable to walk and totally reliant on a wheelchair will find there are many barriers to finding somewhere to live. If you are lucky and your incapacity comes when you own your own home, you will be able to apply for a disability grant to help with making modifications to your home as long as you don’t have over the prescribed limit in savings & income.

For those without their own homes that rent to provide a roof over their heads you will encounter several difficulties. Private landlords unwilling to provide secured tenancies, and local councils / social landlords that will not take into account your particular needs. You will be left with choices all extremely unpalatable and in varying degrees unworkable.  

Social Housing. You apply to join the local waiting Iist and if you have a medical need will be assessed by a housing OT. This is where it seems to go wrong, as the remit of the OTs seems to be to try and under remit your disability as much as possible so that they can make you look like you are being overly fussy about where you live. You will encounter phraseology such as, “of course you will need to consider ground floor flats” , “you know we do not have many bungalows in our stock”, etc etc. The approach is not to document what you actually need but how much they think they can get away with. This has led to me seeing disabled people all around me in places that I know they, family and their care workers must be struggling in. The council does not seem to grasp the difference between someone that needs level 2 housing and level 3 wheelchair accessible housing. Also that within level 3 there is two further categories, firstly the independent wheelchair user that is either living solo or with family and secondly the dependant wheelchair user where the home is also a place of work for care-workers. The latter needing the greater “out of the box” thinking as standard wheelchair home will not necessarily work because of the possible extra hygiene and medical requirements. Peterborough like many councils up and down the UK is badly letting down it most vulnerable in this respect.

Private Renting. If you are a dependant wheelchair user you will be extremely lucky to find a private landlord that is willing to give you a secure tenancy of five years plus so that you can apply for a disability grant to make the changes you will need to make a safe accessible home.  It is about time there was a requirement of multiple property landlords that have 10+ properties to make the 1 in every 10 accessible to a wheelchair user.

New Builds. Planning departments should insist that large new developments include an appropriate mix of all building types.

Extra Care / Care Homes / Nursing Homes. Much has been said in the press lately about the problems people face with dementia. A horrible disease that took my maternal grandmother many years ago. I have become increasing worried lately for our older folk and disabled that do not have this disease as their liberties are being taken away in the institutions above in the name of keeping those with that disease safe. These institutions should be very wary of this, it is very difficult to accommodate the very varied needs of those in these housing options. I have also become increasingly aware that families are putting their loved ones in extra care facilities because of the degree of independent supported living it gives as a more socially palatable solution as opposed to the guilt of putting loved ones in a care home and all the negative associations that has. Even when this is not suitable because of advancing dementia, lack of facilities to cater for complex medical problems and from where I am sitting local councils are duplicitous in this. Every area needs to have a mix of different facilities that cater for the different difficulties people find in later life or when disability is involved. I personally do not think Peterborough has got this balance right at present. People are being put in places according to next on the list, emergency placements etc instead of what is right for them and their condition.

Lessons to learn:
  1.       Someone at the council needs to head up a task force with social services and NHS continuing care people, looking at who is on the housing list with what medical / disability needs. Then a plan needs to be put in place as to what measures can be taken in conjunction with those citizens to house them according to need and not what the council can get away with. This would include the acquisition of a small amount of privately owned bungalows to refurbish, new builds and existing Housing Association properties.
  2.       Someone needs to deter families from putting disabled & elderly relatives inappropriately in extra care facilities. Checks need to be made prior to move regarding accessibility, hoist availability, specialised care worker availability.
  3.       OTs at the council need more training in the difference between someone needing independent level 3 wheelchair accessible housing and those that need specialised dependant housing to house care-workers as well as tenants.
  4.        Private landlords need to be engaged to try and persuade a number of them to cater for wheelchair applicants.


City Planners:

If I were to write a school report about accessible planning in the City of Peterborough it would say “could do better”. In all aspects of planning questions should be asked as to how does my decision affect a wheelchair user? can a wheelchair user access this business ? will this pavement surface I am signing off be comfortable for a chair user to traverse? Should this business owner being doing more to make this planning application more disability friendly ? Has the business done the wheelchair access test ? Should this lift be big enough to accommodate an ambulance trolley ? Can a wheelchair user get out to a position of safety quickly and easily ? should this buildings ceiling be capable of taking a ceiling hoist ? Is this public access room big enough to accommodate a person in a wheelchair? Should this new small business be allowed to have their business upstairs with no access? Etc etc….


So there you have it some of the things Peterborough could do better to make Peterborough a more inclusive city. 

Saturday, 27 October 2012

Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 


  • social care provision, costs, funding options, where to be provided, type of care.
  • NHS Continuing care worker provision, how much, how many, where etc.
  • Is a Care / Nursing Home appropriate.
  • How far away would housing, care home be away from rest of family
  • Is current Housing fit for purpose.
  • How much should the GP be involved over and above the norm.
  • Are there any other agencies involved.  
  • Does the Client have all benefits entitled to.
  • Is there a need for on going physiotherapy.
  • Is there a need for supplies of equipment and consumables 
  • Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.


Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  

Funding

I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 


  • Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
  • Provided with totally unsuitable care agencies for Hubby's complex needs.
  • Care workers provided have not been vetted sufficiently.
  • No cognisance taken of the risks to my health as his carer.
  • GPs not pro-active in ensuring health and well being.
  • We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
  • We have had various ups and downs getting Hubby appropriate medical care.
  • Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
  • My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
  • My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.