Welcome readers to another post for the National Health Blog Post Month with WEGO Health!  The prompt that I have chosen for today asks to describe the perfect care package for members of fellow patients.  This actually for my particular condition, with a neurological condition is actually extremely difficult as patients with neurological conditions can be likened to snowflakes – every one different from the next, each one unique.  Not every patient will experience the same set of symptoms, so in reality each patient will need an assessment by social services to really determine the support that they require to live a more independent life.  But, I will talk about my personal experiences with Community Care Packages and what has worked for me personally.

I was assessed by Social Services back in April, and was then allocated my own social worker (whom was now changed!).  I would recommend anyone with a disability to think about contacting their local Social Services and getting themselves a social worker, as personally mine has been extremely useful such as advising me ways in which I can become more independent and self-sufficient as well as helping me sort out problems such as those regarding benefits for example.  My social worker kindly wrote a letter supporting my application for such benefits and thankfully has seemed to work, as I had a letter on the weekend informing me that they have placed me in the Support Group, without needing to attend a medical!  This is the first time this has happened as I usually am denied such benefits after attending a medical, which I have had to appeal on a number of occasions.

The most helpful aspects of my Community Care Package are as follows:

• Access to ‘LifeLine’: Due to many of the aspects of my condition – the constant, dizziness, episodes of vertigo as well as the weakness in my legs means that I am at risk at falls.  In fact, I am constantly at risk of falls, and often experience many throughout the day (especially on very bad days!).  And very often because of the weakness in my legs and arms, I am not always able to get up without assistance from another person.  Now, although I live with my parents, due to work commitments, they are not always at home.  So, this is where ‘LifeLine’ come in very handy, as it’s a medical alert service: It works by whenever I have a fall and cannot get up, or if I become very unwell, all I have to do is press a button which is on a chain worn around the neck.  The receiver will then connect through to a call centre, who will ask me what has happened and if I need assistance.  They will then contact one of the three emergency contacts that I provided to them; and if no one can be contacted they will then alert the emergency services.  As you can see , it can be a fantastic support system for those who are frail, the elderly or the disabled who are at risk of falls and accidents; it really gives a piece of mind, for not only patients but family members as well
• As part of the Disability Team of my local Social Services, they have a Social Inclusion Officer; a designated social worker who is responsible for initiatives that support those who may be socially excluded from the wider community.  Those who, like myself have difficulties with being independent with going out and accessing local groups and amenities.  It was thanks to this initiative with my local council that I was able to find a group like ‘Life 4 Living’ and being able to get together with other people for a few hours.  Now, being the group’s secretary has really brought me out of my shell and given me confidence!  Initiatives like these really work and offer a fantastic lifeline for those who may be stuck in the house alone for long periods; giving the opportunity to not only have fun but also the opportunity to socialise
• Access to mobility aids can be a real benefit for disabled people.  They can obviously be purchased, but often are very expensive, so as part of the perfect community care package would definitely be an access to various mobility aids that will help and support the individual patient to not only mobilise better but also be able to be more independent.  As part of my community care package, I was offered a perching stool so I am able to sit down so I can safely do some cooking independently.  I was also helped to apply for a wheelchair, which due to the weakness in my legs stops me from being able to go out for long periods of time.  Now, with the wheelchair I can go out without the worry of my legs collapsing from under me, and can even go out for longer! – bring on those long shopping trips and days out!!   Although, if it were up to me I would make these mobility aids more fashionable especially for people around my age – available in lots of different, bright colours such as pink!
• Direct Payments: Also, as part of my Community Care Package, I was advised to pay for Direct Payments, which according to the Welsh Government:

This enables individuals to purchase the assistance or services that the local authority would otherwise have provided.  Direct payments support independent living by enabling individuals to make their own decisions and control their own lives.

Direct payments have gradually been extended to include:

• older people;
• carers;
• parents of disabled children; and
• disabled adults.

Thanks to the Direct Payments scheme, I have been able to employ a Personal Assistant, specifically to help me get out of the house and go shopping for items that I need, or for trips to places that I wish to visit.  This is a fantastic scheme, as it allows people like myself to lead a more independent lives and to be able to have help doing things that they wish they could do or go places but haven’t been able to because of individual circumstances.  Having a P.A. means that I can live more independently, go out more and be less dependent on my poor parents!

So they are aspects of my ideal Community Care Package for patients like myself.  Readers, what do you think of this package, are there services that I may have missed which could help patients like myself?  Please share any ideas or stories that you may have regarding Social Services and Community Care Packages!